Getting Out While the Getting's Good

By Dena Davis

Dr. Davis is currently at Lehigh University. She taught at Cleveland-Marshall College of Law (Cleveland State University) and Central Michigan University. She received her doctorate in religion from the University of Iowa and her J.D. from University of Virginia. Her specialty is bioethics, and her specific focus is on the ethics of genetic medicine and genetic research. Dr. Davis’ latest book is Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures (2nd Edition, University of Oxford Press, 2010). Dr. Davis has been a Fulbright scholar in India, Italy, Israel, Indonesia, and Sweden. Dr. Davis serves on the Central Institutional Review Board of the National Cancer Institute, and is a member of the NIH Embryonic Stem Cell Eligibility Working Group.

A number of times in the last two years I have been invited to speak about Alzheimer’s disease (AD). The venues have all been academic, but nonetheless have differed widely: South Carolina and New York City; bioethicists; physicians; undergraduates; hospital staff. I always begin by inviting people to participate in a thought experiment. I tell them that I am going to describe two people and then ask them which of the two they would prefer to be. (These people are actually my parents, but I don’t tell them that.) I first describe “M,” who remains cognitively intact and lives independently until his death from an aneurysm at 87. Then I describe “F,” who died at 99, after a ten year decline into Alzheimer’s disease. (I usually give a few details, such as when F was no longer able to live independently, when she became incontinent, when she no longer recognized family and friends.)



At this point, I hold my breath. I am about to ask my audience to choose whether they would prefer to be M or F, but the rest of my presentation relies on the assumption that most people will choose M. What if they don’t? At a recent conference in South Carolina, I almost funked it, made nervous by my own stereotypes about the South, and also because the previous speaker had given a heart-warming presentation of elderly people with dementia responding to music and clowns. At Emory University, my talk was preceded by a tremendously appealing presentation from a gentleman with a family history of Alzheimer’s. He spoke movingly of his aunt’s life and death with the disease; dare I suggest that most of us would prefer to die before we become symptomatic?

A portrait of a man with dementia.

(Image courtesy of Pixabay.)

However, despite the different venues, the response is always the same: virtually everyone in the room would prefer to die suddenly than to live a decade longer but with dementia. I know that there is a big gap between preferring to die before dementia, and taking that death into one’s own hands. Nonetheless, I know that I am not the only person who plans to “get out while the getting’s good,” and to attempt to end my life before dementia robs me of the ability to act. 

Achieving this goal, however, requires overcoming some daunting obstacles. One of the most difficult is how to find what I call the sweet spot, between not ending one’s life too early and missing out on some good years, and not missing the window of opportunity by putting it off too late and sliding into dementia. There are conflicting accounts of whether one is still able to make and carry out a plan while in the early stages of dementia, but that is a risk I am not willing to take. We do know that two of the earliest signs of dementia are loss of executive function, and lack of awareness of one’s own disability. In other words, one may be unaware of one’s increasing dementia, and unable to make a plan and carry it through. Here are two vignettes from the beginning years of my mother’s life with dementia, when she was still living independently, driving, paying bills, and legally capacitated:

My mother returns from an outing with another elderly woman. “I feel so sorry for Angela! She doesn’t know what’s what. She keeps repeating the same question over and over again. It’s very irritating.” My mother exhibits no awareness that she herself asks the same questions over and over again. 

My mother decides to get a cat. She mentions this to me and my brother, in fact she mentions it every time in our almost daily phone conversations. “Great idea, Mom, you should definitely get a cat. You know where the animal shelter is. Get a friend to go with you.” Next day, next week, next month, “I am going to get a cat.” Finally, I asked my son, on his next visit to his grandmother, to take the initiative to go with her to get a cat. They did and brought back Raven, who was a great success. My mother had a reasonable wish to do an easy and appropriate thing, well within her capacities, but there was a disconnect between her wish and her ability to act on it, almost like pushing down on the gas pedal and discovering that the cable has been cut. 

Image courtesy of Flickr.

Although my mother had spoken often during her life of her intention to commit suicide rather than live with dementia, she had missed the window of opportunity and had left it too late. But what would have been the right time? My mother did not begin to experience dementia until she was nearly 90, so had she arbitrarily decided to end her life at 85 (a point at which half of all Americans have some form of dementia) she would have lost some good years.



Where is the sweet spot?



This problem is brilliantly portrayed in Lisa Genova’s best-selling novel, Still Alice.¹ Alice is a successful academic, at the top of her game, when she is diagnosed with early onset AD. She knows that research and teaching will soon be beyond her, but she is hoping for a few more years of enjoying her family and the mundane pleasures of an ice cream cone or a walk in the park. On the other hand, she is protective of her dignity and is determined not to end her life with a protracted decline into dementia. She crafts a strategy in which she programs her smartphone to buzz her every week with a simple quiz; when she is no longer able to respond appropriately to questions about the date or the names of her daughters, she will be directed to open a folder on her computer in which she has left a letter, written by Alice now to her later, demented self. However, Alice fails to realize when she begins to fail the quiz, and eventually she leaves the phone in the freezer, which ruins it. But one day, aimlessly clicking through files on her computer, she finds the letter she had written to her later self. The letter opens with words of love and reassurance, and then directs Alice to go upstairs to her bedroom, find a bottle at the back of her nightstand drawer marked “Alice,” and to take all the pills in the bottle with a big glass of water, get into bed, and go to sleep. The letter warns Alice not to discuss this with anyone—just do it. Alice wants to comply, but as she walks up the stairs to her bedroom, she forgets her purpose. She goes downstairs again to read the letter, remembers her purpose, but forgets again as she climbs the stairs. She wishes she could print out the letter to bring it with her, but no longer remembers how to work the printer. Eventually, she is distracted by her husband’s voice, and forgets the whole thing.

Image courtesy of Wikimedia Commons.

Although I doubt we will ever see a perfect solution to the “sweet spot” problem, the last decade has seen progress in a number of areas that can help individuals assess their background risk for Alzheimer’s, and the immanence of its approach. First, it is now possible to use direct-to-consumer genetic testing, such as 23andMe, to test oneself for an important genetic variable that influences one’s risk of getting Alzheimer’s: APOE.  Although even having two APOE4 variants does not doom one to the disease, it substantially raises the likelihood. Those who inherit one copy of the e4 form have a three-fold higher risk of developing AD than those without the e4 form, while those who inherit two copies of the e4 form have an 8- to 12-fold higher risk.² People who have themselves tested and discovered a higher than average risk might wish to take further steps to monitor for any signs of the disease. Intriguingly, Alzheimer’s is now seen as a “3-stage disease,” of which the first stage occurs even before symptoms develop, perhaps decades before.³ It is increasingly possible to identify those people for whom the disease process has begun, but before they are symptomatic. Even better, it might be possible to track the disease progression, so as to end one’s life as close as possible to the last “good” moment.



Current efforts to diagnose AD in the presymptomatic stage are driven by two scientific goals. First, finding the disease at the earliest possible stage identifies appropriate patients for treatments that could slow or perhaps even reverse the course of the disease. This is crucial, because there is general consensus that the reason there are no effective medications for Alzheimer’s is that by the time the disease produces symptoms, it is way too late. Second, presymptomatic diagnosis is a crucial building block in medical research that seeks to find and test those at high risk for the disease.



Presymptomatic testing runs a gamut that includes neuroimaging to track volume loss and cerebral blood flow in the brain, concentrations of amyloid in the cerebral spinal fluid, PET scans, blood tests, and noninvasive tests of episodic memory.⁴ Other possibilities include motion sensors and “smart carpets” that diagnose impending dementia from changes in gait.⁵ These monitoring systems are part of a general movement to use technological surveillance to aid people in aging “successfully” at home, but there is no reason why a savvy and determined person could not make use of them to direct information only to herself.

Image courtesy of Wikimedia Commons.

The degree of certainty one needs to act is, obviously, a matter for each individual to decide. Each of us has a different balance of how we weigh more years of life against the value of not becoming demented. People have been making these kinds of judgments for years, usually in the face of uncertainty. Women, for decades, have been asked to weigh the risk of having a child with Down Syndrome, against the risk of losing a pregnancy through amniocentesis. People with cancer balance the possible benefits of various treatments (many of them experimental) against the possibility of side effects that can include cardiac damage and even secondary cancers. This is no different. Death is irreversible, but so is dementia. And once one has started down the dementia road, it is too late to turn back.





References

1. Lisa Genova. Still Alice (New York: Pocket Books, 2009).

2. Alzheimer’s Association. In Brief for Professionals. My Mother Has Alzheimer’s Disease: Am I Next? https://www.alz.org/health-care-professionals/documents/InBrief_GeneticLink.pdf Accessed August 9, 2017.

3. US Food and Drug Administration, Guidance for Industry: Alzheimer’s Disease: Developing Drugs for the Treatment of Early-Stage Disease: Draft Guidance (for comment purposes only), February 2013. http://www.fda.gov/downloads/Drugs/ GuidanceComplianceRegulatoryInformation/Guidances/UCM338287.pdf (accessed 10 August 2017).

4. Dena S Davis,“Alzheimer disease and pre-emptive suicide,” Journal of Medical Ethics 2014;40:543-549.

5. Pam Belluck, “Footprints to Cognitive Decline and Alzheimer’s Are Seen in Gait,” New York Times 16 July 2012.

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Davis, D. (2017). Getting Out While the Getting's Good. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/09/getting-out-while-gettings-good.html

The Neuroethics of Brainprinting

By Anna Farrell 

Anna Farrell is a rising second year undergraduate student at Emory University. Early on in her Neuroscience major she became interested in Neuroscience’s interdisciplinary nature and continued on to declare a second major in English. 

As cyber espionage and hacking are on the rise (Watson, 2016), major corporations, governments, and financial systems have pushed for using biometrics as a more secure way to guard their data. Biometrics measures unique physical characteristics as a way of ascertaining someone’s identity. A wide range of physical characteristics are currently used in biometrics, including DNA, iris, retina, face, fingerprint, finger geometry, hand geometry, odor, vein, and voice identification (Types of Biometrics). Governmental uses for biometrics span border control, customs services, and online access to critical systems. However, fingerprint and iris identification results are becoming more replicable as hacker’s abilities advance (Watson, 2016), causing researchers to begin to look beyond the typical biometric features. One of the new methods being studied is electroencephalogram (EEG)-based neurological identification. However, using brain wave biometrics as a means of identification establishes a framework which, if underestimated, could put sensitive personal data in jeopardy. 

Lawrence Farwell invented Brain Fingerprinting as a method of determining what information is contained in the brain (Ahuja, & Singh, 2012). This began in 1986 with the investigation of event related potentials. Event related potentials under the P300 response category are electrical signals that occur 300 milliseconds after the subject has been shown a stimulus that is recognized as familiar (Farwell, 2014). Over time, many Brain Fingerprinting methods developed with additional factors supplementing the analysis of the P300 brain response. One of the more prevalent approaches produces a neurological reaction named the “memory and encoding related multifaceted encoding electroencephalographic response” or MERMER (Ahuja, et al., 2012). 

This image depicts Dr. Lawrence Farwell conducting a Brain

Fingerprinting test on Terry Harrington.

(Image courtesy of Wikimedia Commons.)

In 1977, Terry Harrington was convicted of murder and 22 years later Farwell performed a MERMER test on him that was influential in the decision to release him from prison (Farwell, 2014). The crime-related stimuli did not produce a MERMER signal, while the alibi-related stimuli produced a MERMER signal, thus implying that Harrington’s brain contained information concerning the alibi and not the details of the crime. However, it was ultimately due to a Brady violation that the Iowa court overturned the case (Harrington vs State, 2003). Some researchers are suspicious about the highly acclaimed accuracy of brain fingerprinting, as the results have not been verified by researchers extending beyond Farwell’s lab (Holley, 2009). 

Now, Farwell’s brain fingerprinting is being researched so that it can be applied to neurological authentication systems. The argument for the development of neurological authentication systems is compelling because brains are physically less accessible to hackers than are fingerprints or DNA, and are thus harder to falsify. However, interference from the skin and skull can make it difficult to get a good signal from an EEG (Usakali, 2010), which may lead to inconsistencies in signal identification. More recently, functional near-infrared spectroscopy (fNIR) security systems have been developed, which have a much higher signal-to-noise ratio than EEG. While EEG systems measure electrical brain activity (Spine, 2016), fNIR measures blood flow in the brain like a fMRI, allowing the method greater spatial resolution but with the mobility of the EEG system (Strait, & Scheutz, 2014). 

A sample of human EEG data.

(Image courtesy of Wikimedia Commons.)

These neural authentication systems herald a new wave of neurotechnology with heightened efficiency, demanding a greater analysis of the privacy violations that may arise. While this constant mining of brain data can offer better security, it also poses a potential threat to the individual. Texas Tech researcher Abdul Serwadda and graduate student Richard Matovu discovered that a six electrode EEG authentication system leaked personal information while verifying the identity of the user. In a study with 25 clinically diagnosed alcoholics and 25 non-alcoholics, the EEG security system recognized the alcoholics with approximately 68-75% accuracy (Matovu, & Serwadda, 2016). These results were obtained through a mutual information metric, which compared the alcoholic sample user EEG data to alcohol usage behavior (Matovu, et al., 2016). However, by only slightly compromising authentication accuracy, this private information could not be extracted from the EEG data (Matovu, et al., 2016). Another study has shown that all three beta bands, brain waves within signature frequency ranges, displayed an unmistakable amplification in EEG readings with alcohol dependent subjects (Rangaswamy et al., 2002). 

Although these technologies are not ready for commercial use, ethical complications ought to be analyzed before the hypothetical becomes reality. Serwadda states that in the wrong hands, these brain waves could be used to gain insight into employees’ possible mental health conditions, learning disabilities, substance abuse, and more (Watson, 2016). Although this is speculative, it rightly emphasizes precaution as we continue to develop authentication measures. If this sort of sensitive information could be gleaned from the EEG system, the unwarranted access that could be surrendered with the data collected by the fNIR security system should certainly not be underestimated. 

Image courtesy of Pexels.

The use of neural authentication security systems turns brain data, previously only accessible to health care professionals, into a commodity. Some companies only make raw EEG data available to the consumer in their more expensive products, turning others’ neurological data into a tool that can be easily sold for greater profit. Such brain data provides corporations and governments with a whole new database of personal data that they can access in the name of quality assurance or national security. Without dialogue to educate the public on EEG systems and the information that can be derived from an EEG signal, many of us may be unaware of the richness of personal information that can be channeled through an electrode. 

Other concerns about neural fingerprinting focus on how their implementation may infringe on our constitutional rights. Should neurological data be treated like other non-invasive physiological samples, such as blood or urine? Or does it qualify as testimony, deserving protection under privacy? As brain fingerprinting data does not fit into either realm fully, some are advocating for a new legal framework to address possible violations of constitutional rights, specifically the fourth (Farahany, 2012) and fifth (Waller, Bernstein, & Ladov, 2012) amendments. The 4th amendment protects the individual from unreasonable searches and seizure. The 5th amendment guarantees that no one should have to testify against themselves. Possible inaccuracies of the proposed methods further cloud the discussion if these technologies are ever to be called upon in a legal setting. 

Image courtesy of Wikimedia Commons.

Americans have compromised on privacy (Larkin, 2011) many times, with post 9/11 airport security initiatives as an example, to better protect the general population. However, the violation of neuroprivacy is unlike previous breaches of privacy executed in the name of security, for none of the other compromises intrudes so personally and directly into the workings of the mind. Situational justification does not validate this abuse; instead, it sets a precedent, which eventually could lead to a wide and indiscriminate acceptance of brain fingerprinting. Championing efficiency, safety, and convenience to push new biometric brain authentication methods misleads the public into thinking that these methods are both harmless and guarantee protection from hackers. 

Dialogue revolving around ownership of brain data and how security systems should go about receiving consent for brain data access is essential to creating a safe and effective means of security authentication services. Research highlighting the possible compromises we may face with brain biometrics is guided by the above principles and must continue to be so guided, to ensure our autonomy over our brain data in the face of technological advances. 

References 

Ahuja, D., & Singh, B. (2012). Brain fingerprinting. Journal of Engineering and Technology Research ,4(6), 98-113. doi: 10.5897/JETR11.061 

Basulto, D. (2014, November 21). The heartbeat vs. the fingerprint in the battle for biometric authentication. Retrieved March 28, 2017, from https://www.washingtonpost.com/news/innovations/wp/2014/11/21/the-heartbeat-vs-the-fingerprint-in-the-battle-for-biometric-authentication/?utm_term=.ad6577f7b338 

Behavioral Biometrics. (n.d.). Retrieved April 20, 2017, from https://www.secureauth.com/products/secureauth-idp/behavioral-biometrics 

Beyond therapy: biotechnology and the pursuit of happiness. (2004). Choice Reviews Online, 42(03). doi:10.5860/choice.42-1550 

Bonaci, T., Calo, R., & Chizeck, H. J. (2015). App Stores for the Brain : Privacy and Security in Brain-Computer Interfaces. IEEE Technology and Society Magazine,34(2), 32-39. doi:10.1109/mts.2015.2425551 

Chuang, J., Nguyen, H., Wang, C., & Johnson, B. (2013). I Think, Therefore I Am: Usability and Security of Authentication Using Brainwaves. Financial Cryptography and Data Security Lecture Notes in Computer Science, 1-16. doi:10.1007/978-3-642-41320-9_1 

Dalbey, B. (1999, August 17). Farwell's Brain Fingerprinting traps serial killer in Missouri. Retrieved May 18, 2017, from http://www.cutbankpioneerpress.com/news/article_a0efcd6e-a9df-57f9-bbcf-5b71f9f2f44b.html 

Farah, M. (2015). An Ethics Toolbox for Neurotechnology. Neuron, 86(1), 34-37. doi:10.1016/j.neuron.2015.03.038

Farahany, N. A. (2012). Searching Secrets. University of Pennsylvania Law Review,160(5), 1239-1308. Retrieved August 13, 2017. 

Farwell, L. A. (2014). Brain Fingerprinting: Detection of Concealed Information. Wiley Encyclopedia of Forensic Science, 1-12. doi:10.1002/9780470061589.fsa1013

Farwell, L. A., & Makeig, T. H. (2005). 

Farwell Brain Fingerprinting in the case of Harrington v. State. Open Court X, Indiana State Bar Assoc., 7-10. Retrieved May 17, 2017. 

Goodman, M. (2015, February 24). Fingerprint and Iris Scanners Seem Secure, but They Aren’t Hack-Proof. Retrieved March 10, 2017, from
http://www.slate.com/articles/technology/future_tense/2015/02/future_crimes_excerpt_how_hackers_can_steal_fingerprints_and_more.html 

Harrington v. State (February 26, 2003), FindLaw 01-0653.
Holley, B. (2009). It’s All in Your Head: Neurotechnological Lie Detection and the Fourth and Fifth Amendments . The Institute of Law, Psychiatry & Public Policy-The University of Virginia,28(1), 1-76. Retrieved April 20, 2017. 

Jimmy Ray Slaughter. (n.d.). Retrieved May 18, 2017, from http://www.clarkprosecutor.org/html/death/US/slaughter955.htm 

Matovu, R., & Serwadda, A. (2016). Your substance abuse disorder is an open secret! Gleaning sensitive personal information from templates in an EEG-based authentication system. 2016 IEEE 8th International Conference on Biometrics Theory, Applications and Systems (BTAS). doi:10.1109/btas.2016.7791210 

Larkin, P. (2011, December 9). How Must America Balance Security and Liberty. Retrieved March 26, 2017, from http://www.heritage.org/homeland-security/report/how-must-america-balance-security-and-liberty 

Liberatore, S. (2016, August 04). Hackers could get inside your BRAIN: Experts warn of growing threat from monitoring and controlling neural signals. Retrieved April 21, 2017, from http://www.dailymail.co.uk/sciencetech/article-3722558/Hackers-inside-BRAIN-Experts-warn-growing-threat-monitoring-controlling-neural-signals.html 

Purcell, R., & Rommelfanger, K. (2015). Internet-Based Brain Training Games, Citizen Scientists, and Big Data: Ethical Issues in Unprecedented Virtual Territories.Neuron,86(2), 356-359. doi:10.1016/j.neuron.2015.03.044 

Rangaswamy, M., Porjesz, B., Chorlian, D. B., Wang, K., Jones, K. A., Bauer, L. O., . . . Begleiter, H. (2002). Beta power in the EEG of alcoholics. Biological Psychiatry, 52(8), 831-842. doi:10.1016/s0006-3223(02)01362-8 

Strait, M., & Scheutz, M. (2014). What we can and cannot (yet) do with functional near infrared spectroscopy. Frontiers in Neuroscience, 8. doi:10.3389/fnins.2014.00117
 

Strong, K. (2014). “Pass-thoughts” and non-deliberate physiological computing: When passwords and keyboards become obsolete. The Neuroethics Blog. Retrieved on April 20, 2017, from http://www.theneuroethicsblog.com/2014/07/pass-thoughts-and-non-deliberate.html 

Spine, M. B. (2014, April). Electroencephalogram (EEG). Retrieved March 26, 2017, from http://www.mayfieldclinic.com/PE-EEG.htm 

The issues with biometric systems. (n.d.). Retrieved March 10, 17 from
http://www.biometricnewsportal.com/biometrics_issues.asp 

Types of Biometrics. (n.d.). Retrieved March 26, 2017, from http://www.biometricsinstitute.org/types-of-biometrics 

Ulman , Y. I., Cakar, T., & Yildiz, G. (2015). Ethical Issues in Neuromarketing: “I Consume, Therefore I am!”,. Science and Engineering Ethics,20. doi:DOI 10.1007/s11948-014-9581-5 

Usakli, A. B. (2010). Improvement of EEG Signal Acquisition: An Electrical Aspect for State of the Art of Front End. Computational Intelligence and Neuroscience,2010, 1-7. doi:10.1155/2010/630649 

Waller, G., Bernstein, S., & Ladov, L. (Directors). (2012, March 20). Neuroimaging in the Courtroom: Video by Neuroethics Creative Team[Video file]. Retrieved August 13, 2017, from http://www.theneuroethicsblog.com/2012/03/neuroimaging-in-courtroom-video-by.html 

Watson, G. (2016, September 30). Professor Shows Brain Waves Can be Used to Detect Potentially Harmful Personal Information. Retrieved February 20, 2017, from http://today.ttu.edu/posts/2016/09/brain-waves

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Farrell, A. (2017). The Neuroethics of Brainprinting. The Neuroethics Blog. Retrieved on
, from http://www.theneuroethicsblog.com/2017/09/the-neuroethics-of-brainprinting.html

Neuroethics as Outreach

By Adina Roskies

Adina Roskies is The Helman Family Distinguished Professor of Philosophy and chair of the Cognitive Science Program at Dartmouth College. She received a Ph.D from the University of California, San Diego in Neuroscience and Cognitive Science in 1995, a Ph.D. from MIT in philosophy in 2004, and an M.S.L. from Yale Law School in 2014. Prior to her work in philosophy she held a postdoctoral fellowship in cognitive neuroimaging at Washington University with Steven Petersen and Marcus Raichle from 1995-1997, and from 1997-1999 was Senior Editor of the neuroscience journal Neuron. Dr. Roskies’ philosophical research interests lie at the intersection of philosophy and neuroscience, and include philosophy of mind, philosophy of science, and ethics. She has coauthored a book with Stephen Morse, A Primer on Criminal Law and Neuroscience. 

As I write this, I am thinking more broadly about ethics and neuroscience than I usually do, pushed by political necessity. The topic of my concern is science education, construed generally. In this era in which “alternative facts” are allowed to bear that name, rather than their true name -- which is “lies and misinformation” -- and in which science is ignored, deemed irrelevant, or actively suppressed, I see a growing need for people in all the sciences and in ethics to speak out and to educate, wherever possible.

Neuroscientists and neuroethicists may actually have an easier time doing this than many scientists whose work has either been so politicized that they have no voice, such as people working on climate change or other environmental issues, or whose research is taken to be so esoteric that it is hard to get ordinary people to care (though much of it, like gravity waves, is really cool!).

Image courtesy of Pixabay.

Neuroscientists, in contrast, are seen as relevant, and, at least so far, remain relatively far from the shadow of politics. Despite appearances, everybody has a brain, and most are at least somewhat concerned about it. Many people who otherwise find science “dry” or irrelevant are interested in the organ that sits between their ears.



I think neuroscientists and neuroethicists are in a better position than many scientists to try to break through the barriers that isolate scientists from large portions of our citizenry, and not just to speak truth to power, but to speak truth to those who keep those in power in power. Educating and pulling in people to the project of science and reminding them of the importance of facts, truth and the inexorable press of reality is of crucial importance. Failing to do so will have repercussions throughout society.

The Neuroethics Blog Series on Black Mirror: White Bear

By Kristie Garza

Image courtesy of  Wikimedia Commons.

Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences of the rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we treat our technology and how it can affect us in return. This piece is part of a series of posts that discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 

*SPOILER ALERT* - The following contains plot spoilers for the Netflix television series Black Mirror. 

Plot Summary

“White Bear” begins with Victoria, the episode’s main character, awakening in an unfamiliar room in front of a TV displaying an unfamiliar symbol. She has no memory of who she is or how she wound up in the room.

Afraid, Victoria begins to explore her outside surroundings, where she finds “onlookers,” individuals in a trance-like state, filming her with their phones. A masked man then appears and begins chasing Victoria. While fleeing, she meets Jem, a fellow individual not under the trance. Jem explains to Victoria that the onlookers were put in their trance due to the strange symbol on the screens and that the masked man is a “hunter,” part of an evil people not affected by the strange symbol.

Victoria and Jem escape the hunters and head toward a location called White Bear, where they plan to “kill the transmitter,” which would lead to the removal of the symbol entrancing the onlookers. Victoria is overcome by a flash of disturbing memories and a feeling of apprehension about White Bear. After hesitantly entering White Bear, Victoria helps Jem attempt to disarm the transmitter, but the duo is diverted by having to fight off two hunters. When Victoria shoots one of the hunter’s guns, confetti and sparks, rather than a bullet, fly out.

Image courtesy of pxhere

Cue lights. Pull back the curtains. Jem, Victoria, and the hunters appear on a stage. As the other characters on the stage take a bow, Jem leads Victoria to a chair and locks her wrists. The audience applauds, and we learn that everything that had happened up to this point was part of a show. An emcee then begins to narrate as Victoria’s mug shot and trial videos appear on the screen. The emcee explains that Victoria is a prisoner who was found guilty of murdering a young girl where she had recorded a video of her fiancé crucifying the young girl in the woods. After being caught, her fiancé committed suicide, but Victoria was “not allowed to get away with her crime as easily.”

Victoria is then forcefully removed from the stage, paraded through the streets, and returned to the same room she awoke in the beginning of the episode. The emcee places a headphone-shaped device on her head. As this device erases Victoria’s memories, the crew members set the stage for the show to begin again the next day.

As the episode’s credits air, images of the next day are shown from the perspective of the “White Bear Justice Center.” The White Bear staff prepare for visitors, who are told the following: 1) you can’t touch her, 2) you can’t talk to her, and 3) you can only video her. At this point, it becomes apparent that the whole episode is portraying an interactive experience, where visitors become part of a retributive justice system, playing the part of onlookers as they help stage the punishment for Victoria’s crimes.

The State of Current Technology

The main neuro-technology used in “White Bear” is the device attached to Victoria’s head at the end of the episode, which seems to erase all previous long- and short-term memories. While a device for deleting one’s memory, such as in “White Bear,” is not in the foreseeable future, there is active scientific research on the modifying specific memories.

Extinction Therapy

Unlike how memory-deleting devices are often depicted in the media, a memory is not encoded in the brain as a video-like entry that can easily be rewound and erased. Most research currently being done to extinguish memories is in the field of post-traumatic stress disorder (PTSD). In the context of PTSD, an individual attaches a fearful valence to a specific, previously neutral stimulus, creating a new association or memory of this stimulus as fearful. Extinction therapy, also known as exposure therapy, works by repeatedly presenting this now feared stimulus until the individual no longer psychologically or physiologically reacts fearfully to the stimulus. For example, Emory University’s Barbara Rothbaum, PhD uses this therapy on her patients with PTSD to dissociate fear from stimuli (such as explosive noises) of traumatic memories.

While this research proves to be effective, it is important to note that extinction therapy does not erase a previous memory. Research done into extinction memory shows that the extinction process is actually creating a new memory pathway that competes with the previous memory, rather than deleting the previous memory (Falls, 1998; Quirk, 2002). As of now, it seems impossible to delete memories as was done at the White Bear facility.

Electroconvulsive Therapy

Electroconvulsive Therapy Model

Image courtesy of Wikimedia Commons

Usually, brain cells are uniquely balanced by excitation and inhibition to allow our brains to function properly. A seizure occurs when there is a disruption to this balance, and a group of neurons fire simultaneously (Fisher et al., 2005). Electroconvulsive Therapy (ECT) is used while the patient is under anesthesia (not as was done at the White Bear facility to a screaming Victoria) to medically induce a seizure through electrical stimulation of the brain though the skull. ECT has been used as a last resort treatment plan for both depression and schizophrenia. Currently, it is not commonly used and remains controversial because one of its side effects is memory loss. Scientists, such as Dr. Marijn Kroes, have begun to try to utilize this side effect to target specific memories. In a 2014 Nature Neuroscience article, Dr. Kroes led a study where researchers successfully used ECT to decrease recovery of a previously stored memory in a group of human patients (Kroes et al., 2014). This study focused on a specific memory of a slideshow story with an auditory narrative that was induced and retrieved in a laboratory environment. Even with ECT showing evidence of potential memory alteration, this technology is far from producing a complete deletion of an entire person’s life memories, like what is seen in “White Bear.” Further, though the device may be effective in deleting a specific memory, scientists are unsure whether the emotions associated with a memory may persevere on some level (such as Victoria’s hunch to not enter White Bear).

Neuroethical Issues

While this episode of Black Mirror has a host of neuroethical issues, the main issue of concern is memory alteration. The way memory alteration is performed in this episode and its implications cross the boundary of cruel and unusual punishment.

Understanding the issues surrounding memory deletion requires an appreciation for the value of a memory. As humans, we are comprised of our memories, and it is argued that these memories make humans their authentic selves (Erler, 2011). For example, Francoise Baylis contends that “identities are created by relational beings mutually engaged in the never-ending project of constituting themselves in and through personal relationships and public interactions” (Baylis, 2011). If Victoria is unable to engage in these kinds of relationships to construct her identity, is memory erasure or alteration a reasonable punishment or does this enter into the domain of cruel and unusual punishment, as described by the US Constitution’s 8th amendment?

Image courtesy of Flickr user Chuck Coker

One must question the utility of the punishment used on Victoria if the device used on her head every night makes her unable to remember her crime. Is she still a criminal if she has no memory of her crime? Dr. Arthur Caplan would say yes. He has been quoted as saying, “we can change some memories without fundamentally changing who [they] are” (Delistraty, 2014). Alternatively, the American Bar Association recommends against execution for individuals who have a mental disorder or disability that impairs their capacity to “understand the nature and purpose of the punishment, or to appreciate the reason for its imposition.” In Victoria’s case, she has no memory of her crime and is repeatedly confused about her punishment. If this form of memory alteration induces Victoria into this confused mental state where she is not herself, it would be unethical to execute her for her crimes. The dilemma in White Bear, then, is that the device central for the punishment is causing the punishment to be unethical.

Or one might argue that perhaps the punishment is meant to offer justice for the victim or the victim’s family. Interestingly, retributive justice is actually found to not aid in forgiveness as much as a more prosocial form of justice (Karremans & Van Lange, 2005), making the viewer again question the utility of this method of justice at White Bear Justice Park. Further, one wonders about the morality of the public participants or onlookers and the actors of the White Bear team.

Conclusion

Current research is far from creating a memory device such as that used in “White Bear” as current neuroscience research is focused on using tools to alter specific memories. The psychological and ethical implications surrounding memory-alteration technology have the potential to completely alter an individual’s life. While this could be helpful for treating disorders such as PTSD, scholars argue that memories are essential to the development of a genuine individual (Erler, 2011).

References

Baylis, F. (2011). The self in situ: A relational account of personal identity. Relational theory and health law and policy, 109-131.

Delistraty, C. C. (2014, May 15). The Ethics of Erasing Bad Memories. Retrieved August 13, 2017, from https://www.theatlantic.com/health/archive/2014/05/the-ethics-of-erasing-bad-memories/362110/

Erler, A. (2011). Does memory modification threaten our authenticity? Neuroethics, 4(3), 235-249.

Falls, W. A. (1998). Extinction: A review of theory and the evidence suggesting that memories are not erased with nonreinforcement. Learning and behavior therapy, 205-229.

Fisher, R. S., Boas, W. V. E., Blume, W., Elger, C., Genton, P., Lee, P., & Engel, J. (2005). Epileptic seizures and epilepsy: definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia, 46(4), 470-472.

Karremans, J. C., & Van Lange, P. A. (2005). Does activating justice help or hurt in promoting forgiveness? Journal of Experimental Social Psychology, 41(3), 290-297.

Kolber, A. J. (2006). Therapeutic forgetting: The legal and ethical implications of memory dampening. Vand. L. Rev., 59, 1559.

Kroes, M. C., Tendolkar, I., Van Wingen, G. A., Van Waarde, J. A., Strange, B. A., & Fernández, G. (2014). An electroconvulsive therapy procedure impairs reconsolidation of episodic memories in humans. Nature Neuroscience, 17(2), 204-206.

Quirk, G. J. (2002). Memory for extinction of conditioned fear is long-lasting and persists following spontaneous recovery. Learning & memory, 9(6), 402-407.

Scharfman, H. E. (2007). The neurobiology of epilepsy. Current neurology and neuroscience reports, 7(4), 348-354.

Tanaka, K. Z., Pevzner, A., Hamidi, A. B., Nakazawa, Y., Graham, J., & Wiltgen, B. J. (2014). Cortical representations are reinstated by the hippocampus during memory retrieval. Neuron, 84(2), 347-354.

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Garza, K. (2017). The Neuroethics Blog Series on Black Mirror: White Bear. The Neuroethics Blog. Retrieved on, from http://www.theneuroethicsblog.com/2017/09/the-neuroethics-blog-series-on-black.html