Duty to warn about mental status: legal requirements, patient rights, and future ethical challenges

By Elaine Walker, Ph.D. 

Image courtesy to Franchise Opportunities

Balancing patient confidentiality with public safety continues to be a contentious issue in both legislation and professional ethics. In this post, some aspects of the delicate balance are examined with reference to professional duties to protect individuals or public safety by warning or reporting on dangers posed by patients. Because “duty-to-warn” has been most salient in the fields of neurology and mental health, these areas will be the main focus (Felthaus, 2006; Werth et al., 2009). 

This year, legislators in the state of New York proposed a bill that would require physicians to notify the state Department of Motor Vehicles (DMV) about certain medical conditions (e g., seizure disorder, dementia) that might compromise driving ability and endanger public safety. The proposed bill was precipitated by the death of two children who were hit by a car driven by a woman who had a record of previous violations and experienced a seizure at the time of the fatal accident. Lawmakers sponsoring the bill argued that the proposed reporting requirement will help get dangerous drivers off the street. Citizens expressed their agreement by marching in support. Understandably, others responded with concern about increased physician liability, as well as potential violations of patient confidentiality and rights. 

Image courtesy to Nick Youngson, Creative Commons 3

Because legislation imposing a legal duty to warn about or report on mental status places health care providers in potential jeopardy for both failure to report and breach of confidentiality, it raises numerous questions about diagnostic procedures and thresholds. For example, in the case of seizures, what categories of evidence should be considered sufficient? While standard procedures for diagnosing epilepsy include electroencephalograms (EEGs), seizures can be readily observable in the absence of any medical test. If a patient refuses an EEG, but the physician observes clinically significant seizures, does that observation provide sufficient evidence to require the physician to report the patient to the DMV? Alternatively, if there is significant EEG epileptiform activity, but no observable seizures, should the patient be considered at-risk for seizures and prohibited from driving?

The responsibility to warn about public dangers due to patient impairment has been especially challenging in the field of psychiatry. In 1976, the Supreme Court of California (Tarasoff v. Regents of the University of California) ruled that mental health care providers had a legal duty to warn identifiable victims of a patient’s serious threats to harm them. This legislation has been widely recognized in U.S. jurisprudence, and it set the stage for national standards for the responsibilities of mental health professionals. It has also generated a large body of literature concerning the circumstances that give rise to these warnings from professionals. But more recently, the discussion has moved from patients to public figures. 

Image courtesy to Max Pixel, Creative Commons

In a highly controversial edited volume (The dangerous case of Donald Trump: 27 psychiatrists and mental health experts assess a president), psychiatrist Dr. Bandy Lee and contributors have taken the duty-to-warn one step further; they argue that the responsibilities of mental health professionals extend to protecting the public from political leaders who are dangerous due to their mental status impairment or brain dysfunction (Lee, 2017). This notion runs counter to the so-called “Goldwater Rule”, formalized in 1973 by the APA in Section 7 of the American Psychiatric Association's (APA) Principles of Medical Ethics, which states that “it is unethical for psychiatrists to give a professional opinion about public figures whom they have not examined in person, and from whom they have not obtained consent to discuss their mental health in public statements.” (This provision was named after presidential candidate Barry Goldwater in response to some psychiatrists’ public statements warning about his psychiatric status.) Taking a position counter to the “Goldwater Rule”, psychologists Scott Lilienfeld, Joshua Miller and Donald Lynam have pointed out that there is substantial research which raises serious questions about the assumption that in-person examinations are the gold standard (Lilienfeld et al., 2018). When compared to in-person psychiatric interviews, observational data, informant reports, and life history information can yield more reliable, predictive, and accurate diagnoses. Because the latter information about public figures is now more readily accessible from a variety of sources, Lilienfeld and his colleagues raise questions about the Goldwater Rule, suggesting it is “outdated and premised on dubious scientific assumptions.” They also advocate for a “duty to inform”, such that mental health experts should be able to comment on a public figures’ psychiatric status when these individuals hold positions of power and could take actions that threaten the publics’ safety, as is the case for political figures. 

With advances in predictive medicine, automated diagnostics, and related scientific fields, our ability

Image courtesy to Max Pixel, Creative Commons

to diagnose and predict illnesses, including neurological and psychiatric syndromes, will increase. For example, in the field of dementia research it is now possible to test for cognitive deficits, such as memory loss, speech, and visual/spatial problems, which appear before the onset of symptoms that meet the severity criteria for clinical diagnosis (Peterson et al., 2001). These deficits occur on a continuum with the more significant cognitive impairments that are the defining features of Alzheimer’s and other dementias. This raises the question of where, on the continuum of symptom severity (i e., from mild to severe cognitive and/or perceptual-motor impairment), should we place the threshold for imposing such restrictions? The implications of scientific advances will be accompanied by more ethical challenges as we attempt to balance professional and legal guidelines about duty-to-warn with patients’ rights to confidentiality.
Of course, these concerns are not restricted to disorders that involve brain function or behavior. There are ongoing debates about duty-to-warn patient’s relatives about hereditary disease risks (Offit et al., 2004) and patient’s social contacts about viral exposures (Burke, 2015). In anticipation of the expanding scope of concerns about professional responsibilities to warn and inform, it is important that ethicists be involved in policy discussions concerning standards for diagnostic evidence and limits on patient and public rights to privacy. 

________________

Elaine Walker is the Charles Howard Candler Professor of Psychology and Neuroscience at Emory University.  She leads a research laboratory that has been funded by the National Institute of Mental Health and private foundations for over 30 years to study risk factors for major mental illness, especially schizophrenia and other psychosis.  Her research has focused on both the behavioral and neurobiological factors associated with psychosis risk.  In 2007, she was invited by NIMH to form a national consortium with eight other investigators who had been funded to do research in this area.  The consortium, The North American Prodrome Longitudinal Study, is the largest prospective study of youth who show clinical signs of risk that has ever been funded by the NIMH.  Now, in the 9th year of funding, this multi-site collaborative study is documenting the behavioral, brain, neuroendocrinological and epigenetic, changes that predate psychosis onset.  

References 

Burke, J. (2015). Discretion to Warn: Balancing Privacy Rights with the Need to Warn Unaware Partners of Likely HIV/AIDS Exposure. BCJL & Soc. Just., 35, 89. 

Chee, J. N., Rapoport, M. J., Molnar, F., Herrmann, N., O'neill, D., Marottoli, R., ... & Lanctôt, K. L. (2017). Update on the risk of motor vehicle collision or driving impairment with dementia: a collaborative international systematic review and meta-analysis. The American Journal of Geriatric Psychiatry. 

Felthous, A. R. (2006). Warning a potential victim of a person's dangerousness: clinician's duty or victim's right? Journal of the American Academy of Psychiatry and the Law Online, 34(3), 338-348. 

Holoyda, B. J., Landess, J., Scott, C. L., & Newman, W. J. (2018). Taking the Wheel: Patient Driving in Clinical Psychiatry. Psychiatric Annals, 48(9), 421-426. 

Knapp, S., & VandeCreek, L. (2005). Ethical and Patient Management Issues With Older, Impaired Drivers. Professional Psychology: Research and Practice, 36(2), 197. 

Lee, B. X. (2017). The dangerous case of Donald Trump: 27 psychiatrists and mental health experts assess a president. Thomas Dunne Books. 

Lilienfeld, S. O., Miller, J. D., & Lynam, D. R. (2018). The Goldwater Rule: Perspectives from, and implications for, psychological science. Perspectives on Psychological Science, 13(1), 3-27. 

Mirheidari, B., Blackburn, D., Walker, T., Reuber, M., & Christensen, H. (2018). Dementia detection using automatic analysis of conversations. Computer Speech & Language. 

Offit, K., Groeger, E., Turner, S., Wadsworth, E. A., & Weiser, M. A. (2004). The duty to warn a patient's family members about hereditary disease risks. Jama, 292(12), 1469-1473. 

Petersen, R. C., Stevens, J. C., Ganguli, M., Tangalos, E. G., Cummings, J. L., & DeKosky, S. T. (2001). Practice parameter: early detection of dementia: mild cognitive impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 56(9), 1133-1142. 

The Principles of Medical Ethics with Annotations Especially Applicable to Psychiatry" (2013 ed.). American Psychiatric Association. 

Werth Jr, J. L., Welfel, E. R. E., & Benjamin, G. A. H. (2009). The duty to protect: Ethical, legal, and professional considerations for mental health professionals. American Psychological Association.

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Walker, E. (2018). Duty to warn about mental status: legal requirements, patient rights, and future ethical challenges. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/11/duty-to-warn-about-mental-status-legal.html

Neuralink: Concerns of Brain-Machine Interfaces

By Oscar Gao



Introduction 

Image courtesy to Nicolas Ferrando and Lois Lammerhuber, Flickr

When Elon Musk starts a company developing brain-machine interfaces, you know it has the potential to be the next big thing. He claimed that for people to be competitive in the artificial intelligence age, we will have to become cyborgs, a "merger of
biological intelligence and machine intelligence” (Marsh, 2018; Solon,
2017). He started the company Neuralink, which aims to build “ultra high bandwidth brain-machine interfaces to connect humans and computers.” This company, at the moment, is hiring computer scientists and engineers who have "exceptional ability and a track record of building things that work" (“NEURALINK”, n.d.). Also specified on its website, one does not need experience in neuroscience to apply for a job. The company does, however, need to work with neuroscientists and neuroethicists to discuss the ethical implications and guidelines for their projects.

The concept of a brain-computer interface (BCI) is not new. As early as 1973, researchers have attempted to develop interfaces that connect brain signals to external devices. This kind of uni-directional interface is often used for patients with spinal cord injury to regain motor control. One example is Ajiboye et al.'s study (2017) in which a patient with a spinal cord injury was able to restore his hand reaching and grasping using a BCI. Elon Musk's company, however, is interested in developing a bi-directional interface by adding an inserted layer onto the brain and therefore enhancing the input and output of the brain. It allows the human to “process and generate information as fast as they absorb it” and thus would make people better at remembering and communicating with others (Winkler, 2017).
I will address the concerns of privacy, coercion, and personhood of this futuristic interface in this post. 

Privacy 

There are gaps in legislation regulation of BCI data (Trimper, Wolpe & Rommelfanger, 2014). BCI data, which can potentially contain elements and indications of one's memory, personal preference, and emotional inclination, should be tightly regulated. Musk’s company is registered as a medical research company for now, but Elon Musk has stated the ambition of creating potential non-medical applications of enhancing able-bodied humans. There are standard guidelines and regulations in place for BCI clinical trials, but there is currently no legislation for its non-medical/clinical research application. Legislators should regulate how the BCI related neuro-data is stored and used to protect consumers’ neuro-privacy. 

Coercion 

Image courtesy to Tom Mesic, Flickr

Elon Musk argued that for people to be productive in a future society, they will have to incorporate a BCI. This leads to the issue of coercion. Take a famous cyborg, Thad Starner, as an example. He has been carrying his machine extension, the precursor to Google glass, since 1993. On NPR, he shared his experiences with Lizzy, his extension. He mentioned that he had Lizzy with him during his Ph.D. oral qualifying exam, and was able to look up detailed information online using the computer (“Computer Or Human? Thad”, 2015). If this type of technology becomes prevalent, as Musk projects it to become, the standard of performance will be raised. People will have to start wearing their own BCI to match other's performance. The technology will change the perceived “normal” function and capacities of a human. This can create implicit coercion if people using BCI gain an unfair advantage and others are forced to start using it to not fall behind. 

Personhood 

According to Starner in the NPR interview, he claimed to be better with people when carrying Lizzy; however, the interview did not feature perspectives from friends and colleagues of Starner. How BCI can alter self-perception needs to be examined. Is the BCI an extension of the user or is it merely a tool? How does it influence or interact with the user's personality? To what extent is the user responsible for the decisions made by the interface (Tamburrini, 2009)? For example, who is to blame if a person commits a crime under the influence of the interface she is carrying? Companies such as Musk’s Neuralink, along with legislators, need to address these questions when developing brain-computer interfaces. 

Conclusion 

Musk and his team are not vocal about their project at Neuralink, leaving the public in speculation of how far they have left to go in building a “direct cortical interface” to enhance human function (Winkler, 2017). "We are at least 10 to 15 years away from the cognitive enhancement goals in healthy, able-bodied subjects," argued Pedram Mohseni, a professor of Case Western Reserve University, when talking about BCI’s future application (Marsh, 2018). However, it is not too early to consider ethical standards for the unavoidable prevalence of bi-directional brain-computer interface, as suggested by Musk (Marsh, 2018). “It’s really important to address these issues before they come up, because when you try to play catch-up, it can take a decade before something’s in place,” says Karen Rommelfanger, director of the Neuroethics Program at Emory University, to the New York Times (Zimmer, 2015).

----

“My name is Oscar. I am from China.
I am a senior at Emory majoring in Neuroscience, and I will go to Georgia Tech
next year to pursue an engineering degree. I am interested in brain-related technologies.”
 













References

Ajiboye, A. B., Willett, F. R., Young, D. R., Memberg, W. D., Murphy, B. A., Miller, J. P., …
Kirsch, R. F. (2017). Restoration of reaching and grasping in a person with tetraplegia through brain-controlled muscle stimulation: a proof-of-concept demonstration. Lancet (London, England), 389(10081), 1821–1830. http://doi.org.proxy.library.emory.edu/10.1016/S0140-6736(17)30601-3 

Computer Or Human? Thad [Boardcast]. (2015, February 12). Retrieved from
https://www.npr.org/2015/02/13/385793862/computer-or-human-thad 

Farah, M., Illes, J., Cook-Deegan, R., Gardner, H., Kandel, E., King, P., . . . Wolpe. (2004).
Neurocognitive enhancement: What can we do and what should we do? Nature Reviews. Neuroscience., 5(5), 421-425. 

Marsh, S. (2018, January 01). Neurotechnology, Elon Musk and the goal of human enhancement.
Retrieved from https://www.theguardian.com/technology/2018/jan/01/elon-musk-neurotechnology-human-enhancement-brain-computer-interfaces 

NEURALINK. (n.d.). Retrieved from https://neuralink.com/ 

Recode. (2016). We are already cyborgs | Elon Musk | Code Conference 2016. Retrieved from
https://www.youtube.com/watch?list=PLKof9YSAshgyPqlK-UUYrHfIQaOzFPSL4&v=ZrGPuUQsDjo 

Solon, O. (2017, February 15). Elon Musk says humans must become cyborgs to stay relevant. Is
he right? Retrieved from https://www.theguardian.com/technology/2017/feb/15/elon-musk-cyborgs-robots-artificial-intelligence-is-he-right 

Tamburrini, G. (2009). Brain to computer communication: ethical perspectives on interaction
models. Neuroethics 2, 137–149. doi: 10.1007/s12152-009- 9040-1 

Vidal, J. J. (1973). Toward direct brain-computer communication. Annu. Rev. Biophys. Bioeng.
2, 157–180. doi: 10.1146/annurev.bb.02.060173.001105 

Winkler, R. (2017, Mar 27). Elon musk launches neuralink to connect brains with computers;
startup from CEO of tesla and SpaceX aims to implant tiny electrodes in human brains. Wall Street Journal (Online) Retrieved from https://login.proxy.library.emory.edu/login?url=https://search-proquest-com.proxy.library.emory.edu/docview/1881307727?accountid=10747 

Zimmer, C. (2015, July 14). Scientists Demonstrate Animal Mind-Melds. Retrieved from
https://www.nytimes.com/2015/07/14/science/scientists-demonstrate-animal-mind-melds.html

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Gao, O. (2018). Neuralink: Concerns of Brain-Machine Interfaces. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/11/neuralink-concerns-of-brain-machine.html

Medicine & Neuroethics: Perspectives from the Intersection

By Somnath Das

Image courtesy of publicdomainpictures.net.

The first year of medical school is infamously rigorous – it both challenges and changes virtually anyone who dares to undertake it. My experience with this trial was certainly not unique. Despite the knowledge I have gained (on paper, at least), I greatly missed learning about a passion of mine: neuroethics. June marked the two-year anniversary of my attending the Neuroethics in Paris study abroad course hosted by Emory University, which served as the foundation of my exposure to this field. I additionally had the pleasure of taking a graduate neuroethics course offered by the Emory Center for Ethics Masters of Bioethics Program during my time at Emory, which was a more rigorous, yet very essential and fulfilling, dive into the field. Given my previous exposure, it felt odd to begin medical school with little opportunity to formally engage in the field of neuroethics. While my experience with the first year of medical school did not include formal content in neuroethics, I couldn’t help but notice multiple parallels between the two fields, which I will briefly discuss in this blog post. Ultimately, it is my belief that physicians must pay attention to, study, and engage in the field of neuroethics. In this post, I illustrate the reasons for holding this belief by highlighting some of the critical discussions present in both fields; it is my hope that these debates balloon to involve many doctors and patients in the near future.

Cognitive Enhancement  

Different and sometimes conflicting concerns spring up when debating cognitive enhancement for healthy individuals from neuroethical versus medical ethics perspectives. In seeking to address this debate from the biomedical perspective, medical ethicists often choose to focus on measurable cognitive benefits (improvements in memory or concentration), adverse effects (stimulant side effects or stimulant-drug interactions), patient autonomy, and informed consent. The distributive justice of cognitive enhancers is also of concern to medical ethicists, being that physicians currently possess significant financial incentives, under the current medical model to prescribe pharmacological stimulants (Cheung & Pierre 2015). Neuroethicists add to the discussion by debating the ethics of both current and future neuroscientific advances in the field of cognitive stimulation (Racine 2010, pg 10). I have previously written about how neuroethicists, in a similar vein to medical ethicists, voice concern over how individuals with more financial resources can use enhancement to gain an unfair cognitive advantage in society; however, others in neuroethics have argued that healthy individuals should have the right to use enhancement at will, being that stimulation may be necessary to adapt to a more cognitively-demanding future (Clark 2014). Indeed, some bioethicists, such as Arthur Caplan note that cognitive enhancement should “always be done by choice, not dictated by others.” Greely et al. adopts a similar view, noting that the cognitive enhancement debate should not focus on “when,” but rather “how” future leaders mitigate the risks and maximize the benefits of stimulants (Greely 2008).

By emphasizing the ethics of neuroscientific advancements, neuroethicists have pointed out the need to further study the motivations for healthy individuals to seek enhancement. In fact, some neuroethics literature has demonstrated that users may seek enhancement due to less medically quantifiable benefits such as “increased energy” as opposed to increased performance on cognitive tasks (Illeva & Farah 2013). A more complete understanding of the motivations of cognitively healthy individuals seeking to further enhance their abilities will inform the role physicians should play in the future of enhancement distribution (Forlini, Gauthier, & Racine 2013; Chatterjee 2017). These motivations are particularly important to assess as people resort to do-it-yourself (DIY) methods of brain enhancement.

Image courtesy of Flickr user, A Health Blog.

For example, there is a growing community of individuals experimenting with transcranial direct stimulation (tDCS) devices, often broadcasting their results via scientifically unregulated forums such as YouTube. Wexler (2017) argues that the rise in DIY-tDCS should be viewed within the broader growth of the “neurohacking” movement, which she observes is primarily focused on self-improvement of neural abilities (as opposed to a pushback on science and its authorities). Wexler notes that understanding the motivations of healthy individuals for seeking enhancement is important, in that it “might be useful in terms of predicting whether or not users might go ‘underground’ in response to regulation.” As neuroscientists continue to push for advancements in brain enhancement (Farah 2012, pg 580), the ethical ramifications of laboratory and clinical experiments will become inevitably more complex. When this increasing ethical complexity is combined with the fact that society at large is demanding more from human brains and scientific information is rapidly becoming democratized, I believe that physicians bear an increased onus of responsibility to translate the findings of neuroscience to best help their patients achieve their life goals with the help of scientific advancements while avoiding significant harm.

Advanced Neural Diagnostics & Patient Privacy 

The advancement of brain imaging has greatly changed how we think about the nature of using cognitive data for research. The predictive capacity of advanced diagnostics for psychiatric and neurological disorders remains a hotly debated topic. In their response to the Nature article “Attention to Eyes Is Present but in Decline in 2–6-Month-Old Infants Later Diagnosed with Autism,” neuroethicists Karen Rommelfanger & Jennifer Sarrett note that clinical investigators stand as some of the last and most important arbiters of clarifying the nature of imaging data to patients. As brain imaging becomes increasingly complex and precise, it will be necessary for physicians to play an ever-increasing role in constructing the guidelines by which these techniques are used in clinical practice to ensure both informed consent and responsible use and interpretation of data. 

It is necessary to note that physicians have the responsibility to not only clarify the nature of medical data collection, but also to protect this data from being used irresponsibly. In 1996, HIPAA introduced further regulations as to what information is considered “protected,” and it created protocols for the transmission of this information via physical and electronic methods. Within their first weeks of medical school, medical students are introduced to HIPAA, and the importance of protecting patient data persists within both scientific and medical training. However, with the advancement of brain imaging the very nature of what data physicians collect on patients is rapidly changing, potentially to the point where neural data is now too sensitive to be transmitted without further legal change. 

Image courtesy of Flickr user, amenclinicsphotos ac.

Martha Farah has written extensively about the ability of brain imaging to capture complex neural data, such as individual personality traits. This observation raises the question: what if this data can be traced back to the individuals despite randomization and privacy protections? Farah notes that under the current legal framework, “functional brain images can be obtained with consent for one purpose but later analyzed for other purposes” (Farah 2012, pg 578).  Perhaps a more important question is, who owns this data? Future physicians are taught that once a patient’s medical information is stored within the hospital medical records system, patients lose a significant locus of control over their data. As neural data becomes more complex, and therefore more traceable back to individuals, would [and can] physicians exert the same privacy protocols and protections codified in HIPAA? The answer remains unclear, and the future will involve significant engagement of perspectives from ethicists, physicians, and patients to ensure the safety of the most sensitive types of medical data. 

Conclusion

The future of medicine is intimately tied to emerging neurotechnologies, and therefore will require a keen understanding of what motivates the public to seek new technologies and how the public conceptualizes these technologies in terms of risks, benefits, and long-term impacts. Gaining this understanding will help physicians and neuroethicists alike to protect individual patient safety and privacy. I believe the physician can serve as the strongest bridge between the worlds of academia and individuals who will be impacted by this technology. This idea is hardly new; from transplantation to novel cancer therapeutics, physicians stand to interpret the intersection of what is possible and what needs to be done in order to heal the patient. Being that some technologies may do more harm than good, the “ideal” physician ultimately should serve to protect their patient from the dangers of novel technologies when the risks outweigh the benefits. It is through proper training and exposure to neuroethics that I believe physicians can better treat their patients and be more adequately prepared to address the future of what is to come in modern medicine. 

________________

Somnath Das is a second year student at Sidney Kimmel Medical College. His interests currently involve integrating neuroethics education into the training of future medical professionals. His interest began at Emory University under the instruction of Dr. Karen Rommelfanger, and he still enjoys occasionally contributing to the blog to this day. The implications of futuristic technologies both within and outside medicine interests him, and he views Neruoethics as a toolbox to think, debate, and perceive the sequelae of the latest neuroscientific innovations.

References

Clark, V. P., & Parasuraman, R. (2014, 01). Neuroenhancement: Enhancing brain and mind in health and in disease. NeuroImage, 85, 889-894. doi:10.1016/j.neuroimage.2013.08.071

Chatterjee, A. (2017). Grounding ethics from below: CRISPR-cas9 and genetic modification. The Neuroethics Blog. Retrieved on July 24, 2018, from http://www.theneuroethicsblog.com/2017/07/grounding-ethics-from-below-crispr-cas9.html

Davis, J. K., Hoffmaster, B., & Hooker, C. (n.d.). Pragmatic Neuroethics. Retrieved from https://mitpress.mit.edu/books/pragmatic-neuroethics

Farah, M. J. (2012, 01). Neuroethics: The Ethical, Legal, and Societal Impact of Neuroscience. Annual Review of Psychology, 63(1), 571-591. doi:10.1146/annurev.psych.093008.100438

Forlini, C., Gauthier, S., & Racine, E. (2013, September 03). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3761009/

Greely, H., Sahakian, B., Harris, J., Kessler, R. C., Gazzaniga, M., Campbell, P., & Farah, M. J. (2008, December 10). Towards responsible use of cognitive-enhancing drugs by the healthy. Retrieved from https://www.nature.com/articles/456702a

Ilieva, I. P., & Farah, M. J. (2013). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3813924/

The Medical Ethics of Cognitive Neuroenhancement. (n.d.). Retrieved from https://www.semanticscholar.org/paper/The-Medical-Ethics-of-Cognitive-Neuroenhancement-Cheung-Pierre/2425ce612b41ca803de9a1d0c437958836193bf4

Racine, E. (2010). Pragmatic neuroethics: Improving treatment and understanding of the mind-brain. The MIT Press.

Wexler, A. (2017). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5423946/

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Das, S. (2018). Medicine & Neuroethics: Perspectives from the Intersection. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/11/medicine-neuroethics-perspectives-from.html

Ethical Implications of the Neurotechnology Touchpoints

This piece belongs to a series of student posts written during the Neuroscience and Behavioral Biology Paris study abroad program taught by Dr. Karen Rommelfanger in June 2018.

By Janet Guo

The TouchPoint Solution™ (commonly referred to as TouchPoints™) is a noninvasive neurotechnology device that one can wear on any part of the body. The device can be accessorized (detachable wristband in each pack available), so it can be worn like a watch or placed inside a pocket or sock. The founders of TouchPoints™, Dr. Amy Serin and entrepreneur Vicki Mayo, consider it to be a neuroscientific device because of the bilateral alternating stimulation tactile (BLAST) action it allows the user’s brain to undergo. This is a device that can affect people in good health or those who suffer from a neurologic disease and is therefore classifiable as a neuroscientific device by the broad scientific definition proposed by Illes & Lombera (2009). The website even claims that the brain can “create new neural pathways that are net positive” and has a “lasting effect on your brain”. In many of the TouchPoints™ advertisements (many of which can be found on the official TouchPoints™ YouTube channel, TouchPoints™ devices are claimed to relieve stress by 70% in under 30 seconds. 

TouchPoints™ was originally launched in late 2015 with the mission of bringing relief to people who have high levels of stress and anxiety. This technology has been through several developments and newer, cheaper versions have been released since its initial launch.  Its presence in news media has been increasing-- Huffington Post (Wolfson, 2017), Mashable (Mashable staff, 2017), and The Washington Times (Szadkowski, 2017) are only a few of the popular news and opinion websites that have published pieces about TouchPoints™. An investigation of the science and ethics behind this device is warranted as the number of sales is increasing greatly due to the expansion of the company to the international level. This expansion was highlighted by founder Dr. Amy Serin at the 2017 SharpBrains Virtual Summit: Brain Health & Enhancement in the Digital Age (SharpBrains, 2018).

TouchPoints™ appears to be a helpful service to those who deal with extreme levels of stress, which is estimated to be around one-third of Americans, according to a 2007 nationwide survey (American Psychological Association, 2007). In addition, TouchPoints™ includes testimonials from users with Parkinson's disease, Autism, and ADHD along with insomnia and general stress, suggesting that its use has helped alleviate some of their symptoms (although there are no clinical claims made by The TouchPoint Solution™). 

Image courtesy of Pixabay

Neuropsychologist Dr. Serin and Vicki Mayo claim that TouchPoints™ works by BLAST technology that alters the body’s fight-or-flight (F3) response to stress or anxiety, allowing you to think clearly. Many of the academic studies cited in the TouchPoints™ site found that bilateral stimulation of the prefrontal cortex and inferior temporal lobe of the brain does in fact enhance comfortable feelings and is a recognized and accepted form of psychotherapy for posttraumatic stress disorder, although the exact mechanism is still unclear (Amano & Toichi, 2016; Nieuwenhuis et al., 2012; Servan-Schreiber et al., 2006). Additionally, Nieuwenhuis et al. (2012) found that bilateral stimulation may have some effect on memory, which is not mentioned on the TouchPoints™ site. None of the peer-reviewed literature cited on the TouchPoints™ site extended the study population to those with Parkinson’s disease, Autism, or ADHD. While there are many case studies including testimonial from past TouchPoints™ users and in-house studies (which have undergone no clear peer-review process), these results must be taken with a sense of doubt since there is clear motivation and obvious bias in the studies Dr. Serin conducts to help market her own product. 

Besides critically evaluating the credibility of the science behind TouchPoints™, it is important to highlight some of the major ethical concerns this technology brings to the surface. Firstly, if this product really has the power to alleviate stress by up to 90%, then those who are able to afford it (starting at $160 for the Basic Value Bundle and reaching up to $1,999 for the TouchPoints™ original institutional pack), would have an advantage over those of a lower socioeconomic class. Unequal access has the potential to widen the current achievement gap we see between children from families of upper and lower socioeconomic class in terms of academic success (Smeding et al., 2013). Many of the TouchPoints™ advertisements promote the product by saying you can wear it within your socks or on your wrists underneath a long-sleeve shirt, which would make the device invisible to the naked eye. If TouchPoints™ is able to considerably lower your stress and anxiety levels, would this be fair to those who are asked to perform under the same high-stress conditions without this technology? Does the use of this device need to be publicized in the workplace or school setting? For example, for students who are taking a challenging exam, the one who has TouchPoints™ devices stored in his socks or on his wrists will feel less stress and perhaps may be able to perform better. This calls into question whether those in authority (such as teachers or employers) should hold the responsibility of allowing these devices in testing rooms. 

Image courtesy of Pixabay

Secondly, as this device becomes cheaper and wide-spread with time, a reliance on this technology may become embedded within society and could even change how we view fundamental features of the human condition. The human body currently has a typical stress response, which involves the release of many stress hormones (Koelsch et al., 2016); however, as time goes on and if this device is used in response to any sort of stress or anxiety, the body may adapt in such a way that it becomes reliant on TouchPoints™. From a neuroethical standpoint, TouchPoints™ has the potential to change a fundamental feature of the human condition mediated through a brain mechanism, although none of the studies on the TouchPoints™ website have addressed this directly. If future research shows the exact mechanism TouchPoints™ induces within the brain, and it differs greatly from the typical stress and anxiety response within the brain, then TouchPoints™ has the potential to alter some of the fundamental conditions of what it means to be human. In line with this, other neuroethical questions also arise: Would reliance on this technology change who you are and how you view yourself? Would diminishing your experience of stress keep you from positively adapting to that stress? Could it change the person you are becoming? 

Thirdly, questions of privacy and safety must be considered. The “Legal Conditions” outline many of the privacy concerns one may have in regard to data gathered by TouchPoints™ such as: Will one’s data be shared with third-parties? What actions will TouchPoints™ take to ensure that personal data, like number of times TouchPoints™ is used per day and personal identification (age, gender, etc.), is protected? Do these protective measures change from country to country? The current conditions are quite vague, and exactly what neurodata is being collected and how that is being analyzed is not explicitly stated. Neurodata is particularly vulnerable because it can contain data that allows for you to be identifiable and alteration or misuse of the data could lead to changes of your fundamental identity. The TouchPoints™ privacy policy states that any materials accessed by third-parties through Touchpoint Properties are available at the user’s own risk. TouchPoints™ also emphasizes that it assumes no responsibility for the “timeliness, deletion, mis-delivery or failure to store any content…, user communications or personalization settings”. This creates room for much concern about what information can be deleted when requested and when it will be deleted. TouchPoints™ can be purchased within many different countries (SharpBrains, 2018), and some services are exclusive to certain countries. TouchPoints™ emphasizes that “those who access or use the Touchpoint Properties from other countries do so at their own volition and are responsible for compliance with the local law”. This forces much of the responsibility on the user in order to ensure compliance with the local law. These aspects of the privacy policy are very general and mention nothing about the real-time access of a user’s data, which should be the minimum privacy standard (Purcell & Rommelfanger, 2017). 

These ethics concerns raise the following questions: Is TouchPoints™ truly a “neuro” technology? How credible and reliable is the research they use to support their claims? How necessary or useful is this device for those without any sort of medical condition? Is it fair for some people to have access and others not to? How might this affect daily human life in the future? TouchPoints™ forces us to consider the broader implications of how much neurotechnology has the potential to impact our daily lives and how easy it is for commercialization of medicalized products to muddy the science behind the product.

_______________

Janet Guo is a junior on the pre-medical track at Emory University majoring in Neuroscience and Behavioral Biology (NBB) with a minor in Chinese Studies. Her first professional exposure to neuroethics in an academic setting was in her NBB471 (Neuroethics) course during her study abroad experience in Paris, France and has remained extremely interested in the topic ever since.

References:

Amano, T., & Toichi, M. (2016). The Role of Alternating Bilateral Stimulation in Establishing Positive Cognition in EMDR Therapy: A Multi-Channel Near-Infrared Spectroscopy Study. Plos One,11(10). doi:10.1371/journal.pone.0162735

American Psychological Association. (2007). Stress a Major Health Problem in The U.S., Warns APA. Retrieved from http://www.apa.org/news/press/releases/2007/10/stress.aspx 

Illes, J., & Lombera, S. (2009). Identifiable Neuro Ethics Challenges to the Banking of Neuro Data. Minnesota Journal of Law, Science & Technology, 10(1), 71-94. Retrieved July 2, 2018 

Koelsch, S., Boehlig, A., Hohenadel, M., Nitsche, I., Bauer, K., & Sack, U. (2016). The impact of acute stress on hormones and cytokines and how their recovery is affected by music-evoked positive mood. Scientific Reports,6(1). doi:10.1038/srep23008 

Mashable staff. (2017, November 27). Project Entrepreneur expands accelerator program to help more women entrepreneurs build scalable companies. Retrieved from https://mashable.com/2017/11/27/project-entrepreneur-3/?europe=true#JkIxMAFH0iqT 

Nieuwenhuis, S., Elzinga, B. M., Ras, P. H., Berends, F., Duijs, P., Samara, Z., & Slagter, H. A. (2013). Bilateral saccadic eye movements and tactile stimulation, but not auditory stimulation, enhance memory retrieval. Brain and Cognition,81(1), 52-56. doi:10.1016/j.bandc.2012.10.003 

Purcell, R. H., & Rommelfanger, K. S. (2016). Biometric Tracking From Professional Athletes to Consumers. The American Journal of Bioethics, 17(1), 72-74. doi:10.1080/15265161.2016.1251652 

Servan-Schreiber, D., Schooler, J., Dew, M. A., Carter, C., & Bartone, P. (2006). Eye Movement Desensitization and Reprocessing for Posttraumatic Stress Disorder: A Pilot Blinded, Randomized Study of Stimulation Type. Psychotherapy and Psychosomatics,75(5), 290-297. doi:10.1159/000093950 

Smeding, A., Darnon, C., Souchal, C., Toczek-Capelle, M., & Butera, F. (2013). Reducing the Socio-Economic Status Achievement Gap at University by Promoting Mastery-Oriented Assessment. PLoS ONE, 8(8). doi:10.1371/journal.pone.0071678 

Szadkowski, J. (2017, November 22). Holiday Gift Guide 2017 - Best in home and health gadgets. Retrieved from https://www.washingtontimes.com/news/2017/nov/22/holiday-gift-guide-2017-best-home-health-gadgets/ 

Wolfson, R. (2017, September 23). A Wearable Stress Relief Device Helps You Relax, While Giving Back To Those In Need. Retrieved from https://www.huffingtonpost.com/entry/a-wearable-stress-relief-device-helps-you-relax-while_us_59c47092e4b0b7022a64696d

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Guo, J. (2018). Ethical Implications of the Neurotechnology Touchpoints. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/09/ethical-implications-of-neurotechnology.html

Trust in the Privacy Concerns of Brain Recordings

By Ian Stevens

Ian is a 4th year undergraduate student at Northern Arizona University. He is majoring in Biomedical Sciences with minors in Psychological Sciences and Philosophy to pursue interdisciplinary research on how medicine, neuroscience, and philosophy connect. 

Introduction

Brain recording technologies (BRTs), such as brain-computer interfaces (BCIs) that collect various types of brain signals from on and around the brain could be creating privacy vulnerabilities in their users.^1,2 These privacy concerns have been discussed in the marketplace as BCIs move from medical and research uses to novel consumer purposes. ^3,4 Privacy concerns are grounded in the fact that brain signals can currently be decoded to interpret mental states such as emotions,⁵ moral attitudes,⁶ and intentions.⁷ However, what can be interpreted from these brain signals in the future is ambiguous.

The current uncertainty that surrounds future capacities to decode complex mental states – and the privacy vulnerabilities that this uncertainty creates for research subjects – requires that participants put trust in BRT researchers. I argue that “trust as reliability” is insufficient to understand the obligations of BRT researchers and that a more robust understanding of trust is needed. The populous deserves to know the possibility for privacy losses in neuroscientific research.

There is a growing body of literature addressing how developing neurotechnologies may change, harm, or undermine our senses of self,^8,9 and there are potential deleterious effects of neurotechnology on privacy.¹⁰ Technologies like positron emission tomography (PET), functional magnetic resonance imaging (fMRI), electroencephalography (EEG), and electrocorticography (ECoG) present numerous ways that scientists can “look into” the brain. Here, I will not address all the concerns that arise with technologies that peer through the skull; my more limited focus is the idea that brain recordings produced as part of research protocols now may one day be used to decipher mental states of individual research participants. This narrow topic will serve as the groundwork for examining the importance of trust in brain recording research (and perhaps beyond).

Privacy, Brain Recording Technologies & Big Data

Image courtesy of Flickr.

Privacy scholars have described multiple types of privacy, such as physical, informational, decisional, and associational.^11-13 I will focus on informational privacy because it is tied to the control of personal information. This broad category can be distilled to information about yourself that you may wish to withhold from certain parties. Such information can be as common as your social security number or as pertinent as possible unconscious racial biases. The concern with informational privacy for brain recording technology is it might allow for the discovery and revelation of mental content “hidden” within recorded brain data. In other words, research subjects may lose the ability to withhold personal mental information.

This topic is nothing new, as the ability to draw additional information from brain data is already of philosophical intrigue.^14,15 As I have said, intentions, moral attitudes, and visual imaging¹⁶

can be deciphered through the collection and interpretation of brain signals from various neurotechnologies (like the electroencephalogram recorded on the exterior of the cranium or, electrocorticography recorded on the surface of the brain).^* Depending on which BRT is used, what kind of mental states the study is examining, and by what means researchers look to interpret brain recordings, a research team could discover different things (i.e. emotions and intentions). The type of procedure could also change what kind of brain recordings are collected (from which area of the brain) and the quantity of recordings collected.

The notion of “big data”¹⁸ might come to mind when considering the vast amount of brain recordings collected by use of these technologies. In research contexts, brain data is actively shared amongst researchers to “spread the wealth.”¹⁹ This practice proves efficient to allow multiple types of research to be done when the costs of conducting research are high. However, the tension rises if/when such data can be re-identified. Although currently this has a low probability of occurring from publicity and small sample groups,^20,21 the chance that it could happen highlights the concerns for the future privacy of brain recordings. If brain recordings are left in a free state of movement and can hypothetically be read to infer the identity (among other things) of the subject, the privacy concerns seem obvious. Therefore, future unknown privacy vulnerabilities of using such BRTs for subjects needs some guidance to aid in the balance between current capabilities for decoding brain data and what could be around the bend for brain recording interpretation.^† 

Trust

Image courtesy of The Blue Diamond Gallery.

Trust is an important, if often under-theorized, feature of medical research ^22-24 and of the patient-physician relationship.^25,26 It is defined as the knowledge or feeling that we can place something of significance in another’s control. Philosophically, one important aspect in the nature of trust lies in the vulnerability of the truster to the trustee.²⁷ We have all experienced this in some form or another when building relationships. In a sense, we “open ourselves up” to others and feel hurt if we are rejected. This rejection should be thought of as being synonymous with feeling betrayed and hints at the importance of a relationship dynamic in this trust schema.^28,29 I will focus on our relationships with researchers (participant-researcher relationship) here.

Reliability is generally the attribute we associate with those people who follow through on their actions. There is an important distinction between trust and reliability in that the social understanding of trust can assist in clarifying. Here, I will define reliability as following an agreed upon contract,^29-31 while trust is associated with more implicit standards of situations not explicitly stated.^28,32 For example, a researcher failing to follow the regulations set by HIPAA is being unreliable with someone’s brain recordings. But if that researcher then sold such information to marketing companies, a more implicit understanding of what should not be done with brain recordings, it would produce a feeling of betrayal. The importance here is the ability of trust to be used in the implicit vulnerabilities of privacy that could be exploited in the future of brain recordings. As the previous section stressed, the future for what brain recordings could tell about us is largely unknown. Therefore, since a patient cannot consent to such exhaustive hypothetical practices completely, an amount of trust between researcher and subject needs to be in place to account for these unknown vulnerabilities. Learning about this part of the research process will allow participants to have more knowledge of when they are vulnerable to better foster the informed consent process.

Clinical Application

Image courtesy of Wikimedia Commons.

The implementation of trust in the patient-researcher relationship is an epistemological question; that is, how can you know who you can trust? Initially, the satisfaction of reliably is used to classify trustworthiness: does what the researchers say they are going to do, happen? The more difficult step is creating the knowledge and feeling that if something does go wrong, then the researchers have your well-being in mind. A topic that addresses this, while not intended for such a use, is the notion of ancillary care. Ancillary care is the care allotted to study participants if something medically concerning is discovered while a participant is in a study. Research obligations are grounded in a kind of implicit understanding of participant-researcher relationship.³³ Lessons about trust found in the ancillary care debates can be applied to BRT research. This may provide a way to understand the activities of researchers accessing, tracking, and possibly controlling brain data as taking place within trusting relationships. So, while it may be premature to speak of codifying trust-based guidelines for BRT research, this may be an avenue worth exploring. This way, while participants might not meet the holders of their brain data, they can still trust them.

^*It is important to note that in these practices patients are consenting to have such information recorded.¹⁷ And since ethically such a practice is sound, recording brain states that a patient is unaware of is an important distinction to make about informational privacy. ²¹ Such a practice does require further ethical evaluation but for this paper, the important point to extrapolate is a subject’s vulnerabilities. 

^† Unknown vulnerabilities are common in scientific research. Will a patient be harmed by the side effects of this drug? Can this plastic be safe around children? Such unknowns are usually the original motivation to conduct research. However, I will only analyze possible harms to privacy in brain recordings. Future literature could explore how trust could work with unknown physical harms in other research fields. 

Acknowledgements



I want to thank the Neuroethics Thrust at the Center for Sensorimotor Neural Engineering for having me as an intern this summer and especially Dr. Eran Klein and Dr. Sara Goering for mentoring me.

References

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Stevens, I. (2018). Trust in the Privacy Concerns of Brain Recordings. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/05/trust-in-privacy-concerns-of-brain.html