International Neuroethics Society Annual Meeting Summary: Ethics of Neuroscience and Neurotechnology

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. 



At the 2017 International Neuroethics Society Annual Meeting, an array of neuroscientists, physicians, philosophers, and lawyers gathered to discuss the ethical implications of neuroscientific research in addiction, neurotechnology, and the judicial system. A panel consisting of Dr. Frederic Gilbert with the University of Washington, Dr. Merlin Bittlinger, with the Universitätsmedizin Berlin – Charité, and Dr. Anna Wexler with the University of Pennsylvania presented their research on the ethics of neurotechnologies.

Dr. Gilbert discussed the cultivation and development of neurotechnologies that use artificial intelligence (AI) to operate brain-computer interfaces (BCI), such as the implanted seizure advisory system, which is implanted invasively into the brain for the treatment of drug-resistant epilepsy (1). He provided three main reasons for the ethical examination of such developing neurotechnologies. The first is that these devices could provide “neuro-signatures” that could aid in the detection of addiction and sexual urges. These issues could challenge our notions of privacy and autonomy, concerns that are being explored with other technologies (2, 3). Secondly these devices, as other similar invasive neurotechnologies, have been shown to cause or be associated with personality changes and because of this we need to understand how these technologies might affect a patient’s notion of self and identity (4). It seems concerning to enter a treatment as a certain person but leave as another. How the risks and benefits of treatment are balanced when a patient prior to surgery might not be the same afterwards challenges conventional standards of risk and benefit. Finally, the field of AI with BCIs is a very ambiguous one with the pace of developing predictive brain implants exceeding our understandings of how they will affect us (5).

Expanding on his second justification, Dr. Gilbert discussed his research on ways these artificially intelligent devices can alter subjects’ perception of themselves. He used qualitative data from interviews to assess the concern that BCIs alter personalities and shared two stories of a 52-year-old woman receiving an AI BCI for epilepsy and a younger female student also being treated for epilepsy with an AI BCI (6). The 52-year-old woman stated that, because of the implanted AI device, she felt like she could do anything, and nothing could stop her (AI BCI induced postoperative distorted perception of capacities).

An open brain-computer interface (BCI) board.

(Image courtesy of Wikimedia.)

This contrasted with the student who experienced postoperative symptoms of depression because she felt the AI device forced her to confront the fact that she was epileptic (AI BCI induced drastic rupture in identity leading to iatrogenic harms). These dialogues have lead Dr. Gilbert to argue for a distinction between restorative and deteriorative personality changes associated with BCIs (what he calls “self-estrangement”) (7).



This distinction is initially helpful for two possible reasons. One, it assists in confirming that a patient’s sense of identity can change in reference to the AI BCI they are treated with, but also that there are certain kinds of patients who are incompatible with being treated with BCIs. Like pharmacological treatments for mental health, some patients might not benefit from the deleterious identify changes associated with their AI BCI treatment. So, in conclusion, Dr. Gilbert advised that those who are not accepting of their neurologic disease should not undergo AI BCI treatment out of concern for the device having a destructive change in their core personality.

Dr. Bittlinger, whose current work focuses on the ethical, legal, and social aspects of psychiatric neurosurgery, presented his research on the ethical evaluation of innovative research involving unknown risk by using the example of deep brain stimulation (DBS) in Alzheimer’s Disease (AD). Dr. Bittlinger emphasized how much of a global burden AD is, with no cure within sight. With only a few drugs available for treating the symptoms of AD, there is an obvious need for innovative research. He said that using DBS as an innovative, or currently unconventional, treatment should be examined ethically before we proceed down the road to other treatment options. To support this, Dr. Bittlinger quoted the Declaration of Helsinki (8) and its sentiments on the need for the patients to be autonomous beings and the importance of consent in research. The notion that the risks undertaken by patients should be low and minimal is not addressed, however, and DBS is in the highest risk class of treatments being explored for AD because of its invasive nature. The Declaration of Helsinki points to this importance, stating “individuals must not be included in a research study that has no likelihood of benefit for them unless it is intended to promote the health of the group represented by the potential subject, the research cannot instead be performed with persons capable of providing informed consent, and the research entails only minimal risk and minimal burden” (9). While all treatments in clinical trials strive for this, the innovative nature of DBS for AD possess large risks for unknown benefits. While AD can be debilitating to the patient, the risk associated with invasive implantation may be too great. Because of this and the fact that clinical trials include possibly un-autonomous decision-makers (the Alzheimer’s populous), Dr. Bittlinger stressed the need for further evidence of DBS efficacy in the long-term.

Image courtesy of Pixabay.

Dr. Bittlinger’s take home message was that “neuroethicists should encourage researchers to see methodological rigor not only as a liability but as an asset.” He is advocating for a form of methodological beneficence. While trials might normally look to cause minimal maleficence, questioning the implicit structure of research to be ethical could provide benefits in the realms of research with the highest risk. After an extensive literature review, Dr. Bittlinger made the important distinction between studies with no unknown risk compared to those with no knowledge of unknown risks (10). This uncertainty of the unknowns is the basis for Dr. Bittlinger’s question of exactly how much pre-clinical data is required to justify clinical interventions with DBS for Alzheimer’s disease. In line with this methodological beneficence and using probability models, Dr. Bittlinger finished off his talk when he stressed the need for neuroscientists to prioritize confirmatory clinical trials over exploratory ones in early stages of research.

Finally, Dr. Wexler presented on the use of brain stimulation in a variety of health and wellness clinics around the United States. Her work focused on the use of tDCS (transcranial direct current stimulation) and how the current studies on the subject have suggested its effectiveness in treating depression, chronic pain, and cognitive enhancement (though there is still debate in the literature about the efficacy of tDCS). She also noted that there is a larger presence of tDCS use in the DIY (Do It Yourself) community, where people fashion their own devices with batteries and sponges; however, it has been more common for tDCS products to be obtained as consumer products (11). Her fascination with the field came from the fact that two groups use these devices: researchers (a very controlled setting) and average consumers (a very uncontrolled setting). However, what struck her was the fact that a third group of people, clinicians, were also using tDCS devices as a means of treatment for their patients (a semi-controlled setting). This semi-controlled setting was curious to Dr. Wexler since it was fraught with ethical concerns distinct from the well-known DIY concerns, and the possible off-label use of tDCS in such a setting.



The semi-structured environment of the clinic presents a clinical bioethical inquiry. How should these devices be regulated and how should they be understood as treatment options? Should they only be approved as a clinical treatment for disease, or perhaps as an off-label procedure to enhance?

Image courtesy of Pexels.

She defined an off-label use as a device or drug used for an intention other than it was approved and referenced using Trazadone, a drug used to treat depression, for alcohol dependency as an example (12). She then went on to discuss the open-ended semi-structured interviews she conducted with health care providers that offered tDCS services. Although the analyses are still underway, she shared some insights she has had so far; namely tDCS use has been tied to complementary and alternative medicine, the pricing of using such devices varies by provider, and the treatment focused on depression, anxiety, and ADD. Out of the practitioners, some thought that tDCS was FDA approved (when in fact it was not), and overall those using tDCS came from people possessing an MD, Ph.D. or no clinical background. Regardless of the legal distinctions between the regulation of the sale of tDCS devices or the use of them, the ethical questions she left us with are pressing ones. Should these devices be allowed to be used in clinics without supporting research?

The developing neurotechnologies are broad in their application, but there are common threads of ethical reflection that Dr. Gilbert, Dr. Bittlinger, and Dr. Wexler have highlighted. As with all new treatment options, our outlook as scientists, philosophers, lawyers, and ethicists should be critical, although not pessimistic. Neurotechnologies look to be great treatment options for many chronic neurological problems; however, the side-effects, and therefore the risk and benefit trade-offs are unknown. The “how” question of connecting the human brain with technology has been solved on some levels; however, what this connection ethically means still needs to be unraveled.

References

1. Mark J. Cook et al., “Prediction of Seizure Likelihood with a Long-Term, Implanted Seizure Advisory System in Patients with Drug-Resistant Epilepsy: A First-in-Man Study,” The Lancet. Neurology 12, no. 6 (June 2013): 563–71, https://doi.org/10.1016/S1474-4422(13)70075-9.

2. Tamara Denning, Yoky Matsuoka, and Tadayoshi Kohno, “Neurosecurity: Security and Privacy for Neural Devices,” Neurosurgical Focus 27, no. 1 (July 1, 2009): E7, https://doi.org/10.3171/2009.4.FOCUS0985.

3. Frederic Gilbert, “A Threat to Autonomy? The Intrusion of Predictive Brain Implants,” Ajob Neuroscience 6, no. 4 (October 2, 2015): 4–11, https://doi.org/10.1080/21507740.2015.1076087.

4. Frederic Gilbert et al., “I Miss Being Me: Phenomenological Effects of Deep Brain Stimulation,” AJOB Neuroscience 8, no. 2 (April 3, 2017): 96–109, https://doi.org/10.1080/21507740.2017.1320319.

5, 6, 7. Frederic. Gilbert et al., “Embodiment and Estrangement: Results from a First-in-Human ‘Intelligent BCI’ Trial,” Science and Engineering Ethics, 2017, https://doi.org/10.1007/s11948-017-0001-5.

8. “WMA - The World Medical Association-WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects,” accessed December 28, 2017, https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/.

9. “WMA - The World Medical Association-WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects.”

10. John Noel M. Viaña, Merlin Bittlinger, and Frederic Gilbert, “Ethical Considerations for Deep Brain Stimulation Trials in Patients with Early-Onset Alzheimer’s Disease,” Journal of Alzheimer’s Disease: JAD 58, no. 2 (2017): 289–301, https://doi.org/10.3233/JAD-161073.

11. Anna Wexler, “The Social Context of ‘Do-It-Yourself’ Brain Stimulation: Neurohackers, Biohackers, and Lifehackers,” Frontiers in Human Neuroscience 11 (2017), https://doi.org/10.3389/fnhum.2017.00224.

12. Letizia Bossini et al., “Off-Label Uses of Trazodone: A Review,” Expert Opinion on Pharmacotherapy 13, no. 12 (August 2012): 1707–17, https://doi.org/10.1517/14656566.2012.699523.

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Stevens, I. (2018). International Neuroethics Society Annual Meeting Summary: Ethics of Neuroscience and Neurotechnology. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/02/international-neuroethics-society_10.html

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

How you’ll grow up, and how you’ll grow old

By Nathan Ahlgrim

Nathan Ahlgrim is a third year Ph.D. candidate in the Neuroscience Program at Emory. In his research, he studies how different brain regions interact to make certain memories stronger than others. In his own life, he strengthens his own brain power by hiking through the north Georgia mountains and reading highly technical science...fiction.

An ounce of prevention can only be worth a pound of cure if you know what to prevent in the first place. The solution to modifying disease onset can be fairly straightforward if the prevention techniques are rooted in lifestyle, such as maintaining a healthy diet and weight to prevent hypertension and type-II diabetes. However, disorders of the brain are more complicated – both to treat and to predict. The emerging science of preclinical detection of brain disorders was on display at Emory University during the April 28th symposium entitled, “The Use of Preclinical Biomarkers for Brain Diseases: A Neuroethical Dilemma.” Perspectives from ethicists, researchers conducting preclinical research, and participants or family members of those involved in clinical research were brought together over the course of the symposium. The diversity of panelists provided a holistic view of where preclinical research stands, and what must be considered as the field progresses.

Throughout the day, panelists discussed different ethical challenges of preclinical detection in the lens of three diseases: preclinical research and communicating risk in the context of Autism Spectrum Disorder (ASD), interventions and treatment of preclinical patients in the context of schizophrenia, and the delivery of a preclinical diagnosis and stigma in the context of Alzheimer’s disease. The symposium was bookended, appropriately, by discussions of two diseases that typically emerge at the beginning and end of life: ASD and Alzheimer’s disease. Drs. Cheryl Klaiman and Allan Levey discussed the clinical research of ASD and Alzheimer’s, respectively. Drs. Paul Root Wolpe and Dena Davis framed the clinical research by highlighting the ethical challenges that must be addressed with preclinical research of those diseases. 

Attempting to detect markers of ASD in infants and Alzheimer’s disease in middle aged adults raises distinct ethical challenges; even so, common hurdles arise in both diseases, highlighting the universality of the questions that all preclinical research must address. The shortcomings of current scientific practice were vividly portrayed during the symposium by people who are both involved in the research and touched by these diseases. As is true for many ethical dilemmas, day-long discussions of these ethical concerns did not produce resolutions. The discussion did spawn a consensus, however: transparency in conveying the implications of preclinical research and the options for the patient going forward is critical to ensuring all patients and families are treated with the dignity they deserve. 

Image courtesy of The Blue Diamond Gallery.

Both ASD and Alzheimer’s disease are proliferating in their prevalence and visibility. ASD, a developmental disorder that disproportionately affects boys over girls, is principally characterized by deficits in social communication and repetitive behaviors. It is now estimated that 1 in every 68 children will be on the autism spectrum [1]. Alzheimer’s disease, the most common cause of dementia, is an age-related progressive neurodegenerative disease that is characterized by a progressive loss of memory and other cognitive functions. Furthermore, over 5.5 million people are currently living with Alzheimer’s disease in the United States, and that number is expected to double in the next 20 years. Given the prevalence of both disorders, most of us know someone diagnosed with ASD or Alzheimer’s even if we have not been personally affected by these disorders. 

However, visibility can backfire by putting a spotlight on the frightening implications of an Alzheimer’s disease or ASD diagnosis. One parent of an autistic patient shared how he was forced to deal with the consequences of such fear after consulting a doctor about his son’s social development. Although the pediatrician believed that the child was autistic, the pediatrician refrained from sharing this diagnosis because he could not bring himself to deliver what he deemed a ‘death sentence.’ Only later, after the family received the diagnosis by seeking a second opinion, did the pediatrician disclose the original diagnosis. 

This doctor’s (poor) choice of words and delayed diagnosis were discussed, largely unfavorably, during the symposium. Even so, we can all empathize with the fear of a diagnosis that we do not fully understand. Being given a diagnosis of either Alzheimer’s disease or ASD before clinical symptoms manifest raises the specter of a loss of autonomy. As Alzheimer’s disease develops, a patient can lose his or her autonomy as cognitive functions fail. In addition to the personal loss of control, patients with Alzheimer’s disease are often unfairly stigmatized by their community. Loved ones can fear of becoming a caregiver and prematurely withdraw from relationships. Misinformation about early-stage Alzheimer’s can also jeopardize a patient’s employment long before he or she becomes cognitively impaired. Autonomy can similarly concern parents of a child with ASD. After the diagnosis, parents may feel cornered into lifelong care for their child, who may lack access to community resources and never be able to live independently. Not only that, but the mountains of evidence disproving the role of parenting in ASD development are not always sufficient to protect parents from being blamed for their child’s disorder, either by themselves or their community. 

Of course, the goal of preclinical research is to strike before the disease progresses – before it is too late to intervene. Clinical trials for both ASD and Alzheimer’s suggest that effective treatments rely on early detection, asking researchers to push the current boundaries for preclinical detection and diagnosis. Treatment outcomes in ASD drastically improve the earlier that intervention starts, which is why Dr. Cheryl Klaiman and the Marcus Autism Center are continuing research of behavioral markers that identify differences in the social behavior of infants as early as 6 months of age [2]. 

Artisitc representation of the neurodegeneration and memory

loss that occur in Alzheimer's disease.  Image courtesy

of Flickr user, Kalvicio de las Nieves.

Sadly, all drugs to treat Alzheimer’s disease that were promising in animal models have failed to show any benefit for human patients. FDA-approved drugs taken by patients with Alzheimer’s only act to treat the symptoms, not the disease. And even those few approved treatments do not provide symptom relief for all patients. The repeated failures of Alzheimer’s clinical trials may be a product of intervening too late. Dr. Allan Levey described how the brain pathologies of Alzheimer’s disease – plaques of amyloid-beta and tangles of tau – are developing for decades before any cognitive impairments appear [3]. 

However, pushing preclinical diagnosis earlier and earlier raises several concerns. In favor of early diagnosis is the notion that even when scientists do not have good news, the patient’s (or parents’) autonomy must be respected (see the Belmont Report). Therefore, the ethical course of action would appear to be to inform the patient when a positive diagnosis is present, whether the disease is in a clinical or preclinical stage. Only then can the patient (or family member) make an informed decision about his or her health. 

Dr. Paul Root Wolpe presented a counter-argument against informing a patient in all circumstances: given that the preclinical state is, by definition, before clinical symptoms exist, any preclinical diagnosis is probabilistic. What is the threshold before informing and intervening, 80%? 50%? Is it more ethically responsible to subject a family to intensive and expensive treatment for ASD when it is not present, or to let the disorder go untreated? The Belmont Report’s mandate on beneficence and non-maleficence does not offer a clear answer. When striving to act with beneficence and non-maleficence, preclinical research relies on relative risk. That is problematic, given that Dr. Wolpe believes that humans are not built to understand relative risk. 

The risk for Type I error (a false positive) in the case of preclinical ASD may be negligible. Behavioral therapy designed to help those with ASD has been shown to benefit all children, typically developing or not. Therefore, the only possible harm would be asking extensive time and effort of the family that was not strictly necessary. Still, with the universality of the benefit, one wonders why scientists should bother with early detection for ASD. Integrating such therapy into all classrooms would both provide treatment for the children who needed it and reduce the stigma of being “abnormal” or “other,” since all children would participate in the same experience. 

Image courtesy of Flickr user, Melissa.

Alzheimer’s disease is different. Science has yet to provide an effective treatment for the disease, and thus a preclinical diagnosis cannot initiate a treatment plan. As mentioned previously, the discovery of effective treatments will likely depend on the ability to detect the disease and intervene early in its progression. This order of events unfortunately means the first cohorts of research participants will not reap the benefits of the science they contribute to. The panelists and audience at the symposium were, unsurprisingly, more split on whether they would rather receive a preclinical Alzheimer’s disease diagnosis for themselves than a preclinical ASD diagnosis for their child. Luckily, patients with preclinical Alzheimer’s disease retain full cognitive function, and thus maintain their capacity for autonomy. However, this does not hold true as patients progress from preclinical to clinical Alzheimer’s disease. Changes in personality coincide with [4] or even precede [5] a clinical diagnosis of Alzheimer’s disease, often causing the clinical Alzheimer’s disease patient to have different wishes and beliefs than the preclinical Alzheimer’s disease patient. With this in mind, many audience members voiced the opinion that they would prefer to die before the cognitive symptoms of Alzheimer’s began.

However, Dr. Dena Davis brought more nuance to this idea, saying that our prospective sympathy as healthy individuals – our ability to accurately predict how we will feel once in a disease state – is profoundly flawed. A proponent of the right to die, Dr. Davis painted a troubling portrait of a patient given a diagnosis of preclinical Alzheimer’s disease. Say that person chooses to end his life once he becomes severely cognitively impaired. By the time the impairment has taken hold, he may no longer remember the initial wish, or may completely change mind. Whose wishes are to be honored: those of the clinical patient or those of the preclinical patient? This conundrum was also heartbreakingly described in Lisa Genova’s novel, Still Alice. 

This quandary is why discussions between ethicists, scientists, and patients are necessary. The ability to detect a disease before clinical symptoms appear is a laudable scientific achievement, but knowledge must be put in context of the consumer of those technologies. Without context, scientific discoveries fail to do good, and can often do harm. 

Effective medicine requires support and trust from the community. Two doses of the Measles-Mumps-Rubella (MMR) vaccine are 97% effective against measles, and yet there were 61 cases in the U.S. in the first four months of this year. These cases occurred a full 17 years after endemic measles was effectively eliminated in the U.S. [6], and are primarily a result of poor vaccination rates. A combination of fear of unsafe vaccines, mistrust in doctors, and a lack of belief in the need of vaccinations drove parents away from the established research of the effectiveness and necessity of vaccines. In parallel, fear of stigma and an unwillingness to face the diagnosis of a brain disorder could similarly push patients away from treatments if scientists are not diligent in their education and branding of the research. 

Nathan created this image to be used as the logo for the

April 28th neuroethics symposium. 

The investment of patients enrolled in preclinical research may produce a larger effect size in clinical trials than would ever be practical outside of a research environment due to the self-selectivity of the participants. Only invested parents would enroll their children in studies that demand time and continuing effort. Similarly, only highly self-motivated study participants would stick to a treatment schedule of infusions and lumbar punctures before Alzheimer’s symptoms ever appeared. One symposium speaker was first drawn to participate in the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4) study because of a family member who suffered from Alzheimer’s disease. Personal ties to the research are stronger motivators to patients than any academic rationale scientists can create. If preclinical research for either disease does produce an effective treatment, both scientists and community health partners will need to put forth the additional effort to instill the treatment with broad appeal and accessibility. 

The burden of garnering community support may fall on scientists more than many scientists might like to admit. Our representative participant in the preclinical Alzheimer’s study was quick to say that personal interactions keep him motivated to continue the study. A large part of the reason why he voluntarily receives infusions of a trial drug by Dr. Allan Levey’s team, and is considering doing a lumbar puncture, is because of the people on the team. The need for scientists to consider the ethics of their research is obvious. However, as our representative study participant underscored, scientists’ interpersonal relationships with their patients must also be consciously developed. That is the only way that the resulting research will do any good in the community. 

Scientists are still developing treatments for Alzheimer’s disease and ASD. No magic bullet is likely to ever appear. However, a diagnosis does not need to be a death sentence. Preclinical detection enables intervention before clinical pathology appears, allowing for an ounce of prevention to be applied before a pound of cure is needed. This is not to diminish the years of demanding, often heartbreaking labor that is asked of caregivers of people with Alzheimer’s disease or ASD. What should drive the scientific research and treatment plans? When asking what is good for the patient and his or her family, we as scientists must always remember who we are serving, and what our end goals are. As one parent at our meeting remarked, “we may not have the cure, but we have the care.”

References



1. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012. 2016, Centers for Disease Control and Prevention.



2. Jones, W. and A. Klin, Attention to eyes is present but in decline in 2-6-month-old infants later diagnosed with autism. Nature, 2013. 504(7480): p. 427-431.



3. Serrano-Pozo, A., et al., Neuropathological Alterations in Alzheimer Disease. Cold Spring Harbor Perspectives in Medicine:, 2011. 1(1): p. a006189.



4. Mega, M.S., et al., The spectrum of behavioral changes in Alzheimer's disease. Neurology, 1996. 46(1): p. 130-135.



5. Balsis, S., B.D. Carpenter, and M. Storandt, Personality Change Precedes Clinical Diagnosis of Dementia of the Alzheimer Type. The Journals of Gerontology: Series B, 2005. 60(2): p. P98-P101.



6. Katz, S.L. and A.R. Hinman, Summary and conclusions: measles elimination meeting, 16-17 March 2000. J Infect Dis, 2004. 189 Suppl 1: p. S43-7.



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Ahlgrim, N. (2017). How you’ll grow up, and how you’ll grow old. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/05/how-youll-grow-up-and-how-youll-grow-old.html

Join us for the Emory Graduate Student Neuroethics Symposium on April 28th, 2017

This spring, the Neuroscience Graduate Program and the Neuroethics Program at Emory University are teaming up to present the 2017 Emory Graduate Student Neuroethics Symposium entitled, The Use of Preclinical Biomarkers for Brain Diseases: A Neuroethical Dilemma. This year’s symposium will focus on the neuroethics of preclinical detection, including discussions of the basic and clinical research being performed and the neurotechnologies being developed for the early detection of autism, schizophrenia, and Alzheimer’s disease. 

The symposium will take place on Friday, April 28th from 10am to 4:30pm at Emory University and is free and open to the public. The symposium will be comprised of three sessions: 

Session 1: Autism, with a focus on the ethics of conducting preclinical research.

Session 2: Schizophrenia, with a focus on the ethics of interventions and treatment.

Session 3: Alzheimer’s disease, with a focus on the ethics of delivering a preclinical diagnosis given the risks for stigma. 

Each session will include input from a patient diagnosed with the disease or family member of someone experiencing the disease, a researcher/clinician, and an ethicist. Speakers will include Dr. Cheryl Klaiman, Dr. Donna Chen, Dr. Dena Davis, Dr. Paul Root Wolpe, Dr. Elaine Walker, and Dr. Allan Levey.

Through this symposium, we hope to highlight the challenges that a patient can face after being given a preclinical diagnosis for a mental disorder, and to underscore the ethical challenges that arise when the ability to detect a future disease outreaches our ability to care for the patient.

You can find more information on our website and in the flyer below, and can register for the event here. We hope you will join us!

A Good Death: Towards Alternative Dementia Personhoods

By Melissa Liu

Melissa is a Medical Anthropology PhD student at the U. of Washington, Seattle. Her nascent research circles the intersection of neuroscience, dementia, and design. Melissa is also a Neuroethics Fellow with the Center for Sensorimotor Neural Engineering, an NSF ERC.  

Something is amiss. Why is there a neighborhood of houses within this assisted living facility? Why do all the houses in the neighborhood have the same 1950s design? Am I standing on carpet? It looks like a garden path. The ceiling feels like a sunset in real time. [1] Where am I? When is this? The questions above are inspired by Lantern, one of several memory care facilities in Ohio based on a patent-pending memory care program created by Jean Makesh where rehabilitation is the goal [2] [3]. However, many more models around the world are based on Reminiscence therapy, a type of therapy which technically has “[no] single definition” but generally “[involves] the recalling of early life events and interaction between individuals” [4]. Research shows that “Reminiscence therapy is used extensively in dementia care and evidence shows when used effectively it helps individuals retain a sense of self-worth, identity and individuality” [4].

Reminiscence therapy serves as the foundation of many types of dementia village (DV) iterations. DV and similarly designed places are based on various models of caregiving and therapies. DV are memory care communities designed with the goal of caring for residents with dementia who live in their personal memories. The communities are designed to provide spaces for a high degree of reminiscence that allows freedom for residents to live their realities.

Image courtesy of Wikimedia

DVs are being designed and built around the world. The San Diego Opera House is currently building Glenner Town Square, a “faux city...that will be like stepping into a time warp.” Located in a warehouse, the “fully functional...self-contained city center” that is a day care center for individuals with dementia [5]. Georgian Bay, an assisted living facility in Canada, includes a 1947 Dodge and visits from Elvis impersonators [6] [7]. In Denmark's Museum in Aarhus exists an exhibit called the “House of Memories” open selectively to people with Alzheimer's. The exhibit is a house that includes both 1950s architectural design and the unique focus on sensorial details. As visitors are led through the house, the actor/museum guide playing the housewife will open a can of coffee specifically chosen for its smell of popular coffee brands in the 1950s. The exhibit is based on research on the “reminiscence bump” that proposes that the “best preserved...memories [are] from a person's teens and 20s” [8]. Reminiscence-based spaces for those with dementia hold a lineage spanning back to 2009 when the groundbreaking DV Hogeweyk was created [9].

Hogeweyk is known for being the first dementia village. Located in Weesp, a suburb of Amsterdam, Hogeweyk is completely enclosed except for one camouflaged door. The village includes twenty-three houses for merely 152 residents [10]— all with severe dementia. The residents are cared for by 250 staff members providing twenty-four-hour care. After experiencing their parents’ dementia, Hogeweyk’s founders collaborated with Dementia Village Architects to design the village. Research shows that relative to living in a biomedical facility, Hogeweyk residents require less medication, have fewer behavioral issues, and report greater quality of life [10]. As written in a Gizmodo article, Hogeweyk is designed for residents to feel “normal” and still “participate in life, the same way they did before they entered a dementia care unit” [9].

Seven general lifestyle apartments are chosen for residents based on how they lived most their lives. For example, a person who lived in a high socioeconomic bracket may be placed in the “upper class” lifestyle apartment. Other apartment types include “homey,” “Christian,” “artisan,” Indonesian,” and “cultural” [10]. It is unclear who chooses and what criteria are used for selecting an apartment lifestyle for a resident.

Image courtesy of Wikimedia

Besides theoretically suffusing residents’ individual lives into apartment designs, the rest of the village is designed as any small town might be. Hogeweyk includes such fixtures as a cafe, a grocery store, a salon, a theater, and gardens. The caregivers play dual roles by working in their medical capacities but also playing the roles of village employees (e.g., gardener, hairstylist). Residents live their lives as they desire: strolling where they please, tending to their hair at the salon, purchasing food. While manicuring the lawn, gardeners can also keep a medical caregiver’s eye on the residents. Hogeweyk caters to the reality (or what he sees as the reality) of individuals with severe dementia.

In comparison, strict adherence to biomedical models of general eldercare have led to many in the United States dying in sterile hospital beds [11]. Scientific research leads to financially costly life-sustaining treatments that lack consideration for a patient’s quality of life (e.g., dialysis) [11]. Models based on valuing length of life over quality of life contributes to a carelessness for the patient or, in non-biomedical terms, human beings who deserve to be thought of as such. Residents of retirement homes that spend most of their daily lives confined to the residential premises might feel a loss of control and freedom. Biomedical models of eldercare may better be used in tandem with design knowledge, which may change both the way practices of the ‘care’ of healthcare and the patient are conceptualized. If medical research points to patients feeling a lack of freedom in residential facilities, implementing long walkways (cf. Hogeweyk) where residents experience greater space would bolster the humanity and value of a resident whose desires and quality of life are seriously considered and respected.

In the case of Alzheimer’s disease, Hogeweyk moves towards recreating a good life as a way for residents to experience a good death. By searching neither for a cure nor a cause, Hogeweyk focuses on creating an ontology that both fulfills the desires of individuals with dementia as much as possible (e.g., watching a play in a theater) and creates comfort and ease for basic skills (e.g. walkways are color coded to help create ease for residents to stay on a path). Rather than treating residents with dementia as patients with symptoms, Hogeweyk holds of prime importance the dignity and personhood of its residents. Respecting the reality of residents informs the facility’s design.

Image courtesy of Flikr

A widely repeated critique in news articles is that Hogeweyk is lying to its residents and fabricating reality for a vulnerable population [12][13]. The village takes reminiscence therapy to the extreme where the past is the present. Even articles casting Hogeweyk in a positive light describe the village as “a more benevolent version of ‘The Truman Show’” [14]. In the article “On Recognition, Caring, and Dementia,” Dr. Janelle Taylor, a medical anthropologist at the University of Washington, Seattle, argues for an alternative configuration of care experientially learned by caring for her mother who has dementia, Taylor writes that “[those] who have little firsthand experience with dementia tend, I think, to imagine it as a more or less purely cognitive loss of a store of remembered facts, manifested in a loss of the ability to recite names and dates and other bit of information” [15]. After being repeatedly asked if her mother remembers her name, Taylor writes that “I don't need my mother to tell me my name...I already know these things” [15]. Rather, the question that should be asked is “Do we grant her recognition?” [15].

These villages are attempting to cater to a growing market of aging Baby Boomers. Hogeweyk's construction cost of over $25 million was primarily government-funded [16]. The resident pays around $6,000 a month. The Netherlands, where Hogeweyk is located, consistently ranks first on measurements of best healthcare systems. Citizens have mandatory government-funded healthcare insurance [17]. With privatized healthcare in the United States, at what cost to residents would the building of a DV be profitable? What kind of care would be provided to those who cannot afford to live in a DV?

The question turns to sustainable models of care for individuals with dementia. Organizations are looking at changing conceptions of age and how communities are configured. Judson, a not-for-profit organization in Ohio, creates intergenerational apartment buildings [18] [19]. Similarly, the Dutch have Humanitas Independent Senior Living Facility that provides free student housing for students who will be paired with an elderly person for a roommate [20][21]. Each student is required to spend at least thirty hours “helping out” their roommates and neighbors [19]. As an institutional affiliate with the World Health Organization, the AARP has a program for Age-Friendly Communities that certifies cities actively creating shifts in eight particular “Domains of Livability” (e.g., housing, social participation, community support) [22]. With the increasing number of people who will be diagnosed with dementia, there is an urgent call to imagine, design, and move towards a future where communities shift towards a different models to care for the aging whether that truly addresses the needs and dignity of the aging. Whether the best model is DMs or something like satisfying new criteria for Domains of Livability or both remains to be seen.

Acknowledgment 

Thank you to Karen Rommelfanger for her generous help and guidance.



References 



 1. Porter, Evan. “One man turned nursing home design on its head when he created this stunning facility.” Upworthy, September 8, 2016. Accessed September 23, 2016. http://www.upworthy.com/one-man-turned-nursing-home-design-on-its-head-when-he-created-this-stunning-facility?g=2&c=ufb1.



2. Makesh, Jean. “PodCast 5 – Seven Building blocks for new learning.” YouTube video, 7:55. Posted April 6, 2015. https://www.youtube.com/watch?v=rDsdigYD-4g.



3. “Svayus – ‘Memories of yesterday to function today ™’.” Svayus. Accessed September 23, 2016. http://svayus.com/.



4. Dempsey, Laura, et al. “Reminiscence in dementia: A concept analysis.” Dementia 13(2014):176-192.



5. Lewis, Danny. “Fake Towns Could Help People With Alzheimer’s Live Happier Lives: Model towns meant to spark memories could help patients with dementia.” Smithsonian, September 21, 2016. Accessed September 23, 2016. http://www.smithsonianmag.com/smart-news/fake-towns-could-help-people-alzheimers-live-happier-lives-180960518/?utm_source=facebook.com&no-ist.



6. McLaughlin, Tracy. “Retirement home turns back the clock for dementia patients.” Toronto Sun, May 17, 2015. Accessed September 23, 2016. http://www.torontosun.com/2015/05/17/retirement-home-turns-back-the-clock-for-dementia-patients.



7. The National. “Home Recreates Past for Dementia Patients.” YouTube video, 6:52. Posted October 11, 2015. https://www.youtube.com/watch?v=9rOYmxIWzJI.



8. Overgaard, Sidsel. “Denmark’s ‘House of Memories’ Creates 1950s For Alzheimer’s Patients.” NPR, September 13, 2016. Accessed September 23, 2016. http://www.npr.org/sections/parallels/2016/09/13/493744351/denmarks-house-of-memories-recreates-1950s-for-alzheimers-patients?utm_source=npr_newsletter&utm_medium=email&utm_content=20160918&utm_campaign=npr_email_a_friend&utm_term=storyshare.



9. Campbell-Dollaghan, Kelsey. “An Amazing Village Designed Just For People With Dementia.” Gizmodo, February 20, 2014. Accessed September 23, 2016. http://gizmodo.com/inside-an-amazing-village-designed-just-for-people-with-1526062373



10. “Hogeweyk, living in lifestyles. A mirror image of recognizable lifestyles in our society.” Hogeweyk. Accessed September 23, 2016. http://hogeweyk.dementiavillage.com/en/.



11. Kaufman, Sharon. Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line. North Carolina: Duke University Press, 2015.



12. Sagan, Aleksandra. “Canada’s version of Hogewey dementia village recreates ‘normal’ life: Canadian facility creates similar false-reality experience based on Holland’s Hogewey.” CBC News, May 3, 2015. Accessed September 23, 2016. http://www.cbc.ca/news/health/canada-s-version-of-hogewey-dementia-village-recreates-normal-life-1.3001258.



13. Napoletan, Ann. “ Dementia Care: What in the World is a Dementia Village?” Alzheimer’s.net, August 7, 2013. Accessed September 23, 2016. http://www.alzheimers.net/2013-08-07/dementia-village/.



14. Planos, Josh. “The Dutch Village Where Everyone Has Dementia: The town of Hogeway, outside Amsterdam, is a Truman Show-style nursing home.” The Atlantic, November 14, 2014. Accessed September 23, 2016. http://www.theatlantic.com/health/archive/2014/11/the-dutch-village-where-everyone-has-dementia/382195/.



15. Taylor, Janelle. “On Recognition, Caring, and Dementia.” Medical Anthropology Quarterly 22(2008):313-335.



16. Tagliabue, John. “Taking On Dementia With the Experiences of Normal Life.” The New York Times, April 24, 2012. Accessed September 23, 2016. http://www.nytimes.com/2012/04/25/world/europe/netherlands-hogewey-offers-normal-life-to-dementia-patients.html?_r=0.



17. “Zorgrek.; uitgaven (lopende, constant prijzen, financiering, 1998-2013.” Centraal Bureau voor de Statistiek, May 21, 2015. Accessed September 23, 2016. http://statline.cbs.nl/StatWeb/publication/?DM=SLNL&PA=71914ned&D1=37-43&D2=a&HDR=G1&STB=T&VW=T.



18. “About Us.” Judson. Accessed September 23, 2016. http://www.judsonsmartliving.org/about/.



19. Hansman, Heather. “College Students are Living Rent-Free in a Cleveland Retirement Home: Research shows that the unique arrangement could have health benefits for the elderly.” Smithsonian, October 16, 2015. Accessed September 23, 2016. http://www.smithsonianmag.com/innovation/college-students-are-living-rent-free-in-cleveland-retirement-home-180956930/.



20. Regnier, Victor. Design for Assisted Living: Guidelines for Housing the Physically and Mentally Frail. Wiley: 2002.



21. Reed, Carey. “Dutch nursing home offers rent-free housing to students.” PBS, April 5, 2015. Accessed September 23, 2016. http://www.pbs.org/newshour/rundown/dutch-retirement-home-offers-rent-free-housing-students-one-condition/.



22. “The 8 Domains of Livability: An Introduction.” AARP. Accessed September 23, 2016. http://www.aarp.org/livable-communities/network-age-friendly-communities/info-2016/8-domains-of-livability-introduction.html.

Want to cite this post?



Liu, M. (2016). A Good Death: Towards Alternative Dementia Personhoods. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/10/a-good-death-towards-alternative.html

Should Presidential Candidates Be Required to Undergo Preclinical Alzheimer’s Disease Testing?

By Kaitlyn B. Lee

Kaitlyn “Kai” Lee is a Project Coordinator in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She helps to investigate the ethical, legal, and social issues of integrating whole genome sequencing into clinical care as part of MedSeq, a project funded by the NIH’s Clinical Sequencing Exploratory Research (CSER) program. Kai earned her BA in Neuroscience from Middlebury College and hopes to continue her education through a joint JD/MPH program.

In her op-ed published in the Houston Chronicle, “Presidential candidates should be tested for Alzheimer’s,” radio and television personality turned author and keynote speaker Dayna Steele advocates testing presidential candidates for Alzheimer’s disease and releasing their results to the voting public. Steele believes voters have a right to know their future president’s Alzheimer’s test results, as she maintains, “I want to know that the candidate I choose not only supports my priorities but is also of sound mind – a mind that will last through four or eight years” (Steele, 2016). Drawing upon her own personal experience with her mother’s Alzheimer’s disease, Steele describes the progression of her mother’s disease from simply forgetting things, to driving while lost, to total mental and physical incapacitation. Steele cites her mother’s rapid 3-year decline to assert that an affected person in a position with as much power as the President would be devastating for the country, arguing that we can avoid such a “catastrophe” by insisting candidates be tested for Alzheimer’s disease and disclose those results to the public.

Presumably, Steele is particularly concerned about testing presidential candidates for Alzheimer’s disease because Alzheimer’s is a progressive neurodegenerative disease that slowly degrades memory, intellectual abilities, and eventually, physical abilities. Alzheimer’s is the most common form of dementia, a catchall term for deterioration of cognitive ability that is severe enough to affect one’s daily life. Because Alzheimer’s is a chronic neurodegenerative disease, symptoms worsen over time. A 2015 report released by the Alzheimer’s Association describes the current understanding of the symptoms and progression of Alzheimer’s disease. In the early stages of the disease, a person can manage independently but may have some trouble planning and organizing and may suffer minor memory lapses, such as forgetting words or misplacing valuable objects. As the disease worsens, individuals exhibit memory loss of significant people or events, confusion with time or place, and personality changes. Finally, as the disease becomes more severe, physical abilities, such as walking, talking and eating deteriorate, and the person will require full-time assistance to perform basic functions until eventual death (“2015 Alzheimer’s disease facts and figures,” 2015). The rate of disease progression differs between individuals, but typically, a person will live 3 to 10 years after clinical symptoms begin (Zanetti et al., 2009).

Neurodegeneration in Alzheimer's Disease,

image courtesy of Wikipedia

Although Steele does not specify in her recommendation what type of testing she believes to be appropriate, someday it may be possible to reliably predict whether an individual will develop Alzheimer’s. During the preclinical stage of Alzheimer’s disease, biomarkers, a general term for biological indicators of disease, begin to present themselves in the body years or even decades before clinical symptoms manifest (Villemagne et al., 2013). Using magnetic resonance imaging (MRI), positron emission tomography (PET), and analysis of specific protein levels (e.g. amyloid beta) in cerebrospinal fluid (CSF), preliminary scientific evidence suggests that biomarkers can be measured to predict an individual’s likelihood of later developing Alzheimer’s, even when he or she may be at present asymptomatic (Cavedo et al., 2014; Langbaum et al., 2013). Although there are no current diagnostic criteria that doctors can use to accurately diagnose Alzheimer’s in a preclinical stage, research is underway to determine standardized biomarker cut-off values and to optimize techniques for CSF assays, PET, and MRI (Sperling et al., 2011). If that possibility is realized, according to Steele’s recommendation, candidates could be required to undergo screenings for Alzheimer’s biomarkers to predict whether they will develop symptoms in the coming years or decades. In this post, I will be discussing testing for Alzheimer’s disease as it relates to predictive preclinical testing for Alzheimer’s biomarkers.

Arguably, Steele’s concerns about testing for Alzheimer’s disease may be more relevant in the upcoming election than ever before, as several candidates in this election have risk factors for Alzheimer’s disease. Age is the biggest risk factor for Alzheimer’s disease, with average risk for a 65-year-old estimated around 10.5% (Sperling et al., 2011). Beyond 65, one’s risk doubles every 5 years, meaning that a 70-year-old has twice the risk of a 65-year-old (Brookmeyer et al., 2011). Three candidates, Donald Trump, Hillary Clinton, and Bernie Sanders, would be over 70 during their term. Bernie Sanders would be the oldest president in U.S. history, ending his term at age 79. In addition, family history is another risk factor for Alzheimer’s. Even if one does not carry the APOE4 gene, an individual has a two- to four- fold risk of getting Alzheimer’s if a first-degree relative has been affected (Fisher Center for Alzheimer’s Research Foundation, 2016). Donald Trump’s father, Fred Trump, suffered from Alzheimer’s for six years before his death in 1999 (Rozhon, 1999). Also, there is some evidence that previous head injury is a risk factor for Alzheimer’s disease, as history of moderate traumatic brain injury (TBI) increases risk by 2.3-fold (Plassman et al., 2000). Hillary Clinton suffered a concussion after falling in December 2012, and although the concussion did not appear to have any lingering effects, it still may put her at higher risk for developing Alzheimer’s later in life (Good, 2014). Given that several candidates in this upcoming election may be at increased risk for developing Alzheimer’s disease, the question of whether or not to test candidates is highly relevant.

Donald Trump, Hillary Clinton,

and Bernie Sanders; images

courtesy of  Flickr user

Michael Vadon and

Whizzers's Place

Despite the fact that a number of candidates in this upcoming election may be at increased risk for Alzheimer’s disease, upon closer examination of the respective rights of presidential candidates and the voting public, requiring candidates to undergo testing is problematic. Although Steele believes that the public has a right to know their candidates’ Alzheimer’s test results, the public’s right to know is not enough to outweigh individual candidates’ 4th amendment right to protection against unreasonable government searches and right to medical privacy. The idea of a public’s right to know information about the health of candidates arises from the philosophy that citizens have the right to be governed only with their consent, and that consent is only meaningful when citizens are making informed decisions (Streiffer et al., 2006). Voters consider health to be a key factor in determining a president’s ability to lead, as suggested by results of a 2004 CNN/Gallup poll cited by Brown (2008), in which 96% of those polled felt that the president’s general health was important or very important to being a good president. Especially given that developing Alzheimer’s disease would severely affect a future president’s ability to lead, the case for the public’s right to know candidates’ Alzheimer’s preclinical test results is compelling.

However, voters’ right to know is in conflict with candidates’ 4th amendment right and right to medical privacy. This conflict is a point of divide among voters; although the CNN/Gallup poll found that almost all of those polled believe it is important to have a healthy president, they have mixed responses about how the health of the president should be ensured. The majority of those polled (61%) believed that the president should retain the same rights as citizens to a private medical record, while a substantial minority (38%) advocated for releasing all health information that might affect the president’s ability to lead (Brown, 2008). I believe that candidates’ 4th amendment rights and rights to medical privacy override voters’ right to know, even when the information may affect a future president’s ability to lead, as in the case of preclinical Alzheimer’s testing.

Under the 4th amendment, people are guaranteed that the “right to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures [by the government], shall not be violated, and no warrants shall issue, but upon probable cause” (US Const., amend. IV). Assuming that candidates are entitled to these rights, the question is, would requiring preclinical Alzheimer’s testing be considered an “unreasonable” search for an ostensibly healthy candidate (Brown, 2008)? I would say so. Testing for Alzheimer’s disease is a psychologically distressing process that has potentially harmful and life-changing consequences, especially given that it is a terminal illness with no treatment at this time (Karlawish, 2011). Receiving an Alzheimer’s diagnosis has been shown to result in shock, fear, anxiety, and depression (Husband, 1999; Husband, 2000; Pratt & Wilkinson, 2003). Because candidates are not yet elected, there is a possibility that they will have to resume their normal lives after the election, and they should not have to bear the life-altering consequences that accompany a terminal diagnosis as a result of their run for presidency. Thus, even if a presidential contender has one or more risk factors for Alzheimer’s disease, an increased risk is not enough to justify the potential psychological distress that may accompany the testing process or preclinical diagnosis. Furthermore, because family history is a risk factor for Alzheimer’s disease, candidates’ family members may also get unwanted and unwarranted risk information, which can in turn cause psychological distress. Clearly, preclinical Alzheimer’s disease testing is an “unreasonable search” that can cause harm not only to candidates but also their family members, and thus, government mandated testing would be in violation of the 4th amendment.

US Constitution, image courtesy of Flickr user Lou Gold

Candidates also have a right not to disclose their Alzheimer’s results. If a candidate voluntarily opted to undergo preclinical Alzheimer’s testing, he or she should have a right to keep that information private. Currently, there are no laws that require the president or presidential candidates to reveal anything at all about their health, as they are covered under the Health Insurance Portability and Accountability Act (HIPAA), which allows patients to control privacy over their health information (U.S. Department of Health & Human Services, 2016). Notably, HIPAA makes some allowances for disclosures in situations where 3rd parties are at risk, such as patients with an infectious disease or patients who express a desire to harm themselves or others. Given this reasoning, one could make the argument that because Alzheimer’s disease could affect a future president’s ability to lead, the public is at risk; however, disclosing candidates’ preclinical Alzheimer’s test results would likely do more harm than good, and ultimately, the public is not at risk due to sufficient federal safeguards in place. Even if a candidate does have preclinical biomarkers for Alzheimer’s disease, he or she may still not develop symptoms for years or even decades (Villemagne et al., 2013); getting a positive result may not even affect his or her presidency, if elected. Further, those without a scientific background may mistake a preclinical diagnosis with a current one, and because Alzheimer’s disease is a relatively stigmatizing label, candidates should not have to endure any potential stigma as a result of his or her candidacy.

Given that requiring candidates to undergo Alzheimer’s testing is unethical, could we elect a president who may develop Alzheimer’s disease during his or her term? Possibly, but I would argue that the consequences are not as dire as Steele fears, due to sufficient federal safeguards in place. For example, the President does not make decisions unilaterally, and our system of checks and balances would prevent implementation of any irrational decisions. In the end, if the President were found to be demonstrating diminished capacity, the vice president would succeed him or her under the 25th amendment. Ultimately, given the federal safeguards in place, Alzheimer’s disease is not a significant threat to the presidency, and thus, requiring candidates to be tested is both unethical and unnecessary.

References



Alzheimer’s Association. “2015 Alzheimer’s disease facts and figures.” Alzheimer’s and Dementia 11 (2015): 332-384. PubMed. Web. 20 Mar. 2016.

"Alzheimer’s Disease." Alz.org. Alzheimer's Association, n.d. Web. 14 Feb. 2016.

Arias, J. (2014). Translating Preclinical Test Results into “Real World” Consequences. The Neuroethics Blog. Retrieved on March 23, 2016, from http://www.theneuroethicsblog.com/2014/05/translating-preclinical-test-results.html.

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Lee, K.B. (2016). Should Presidential Candidates Be Required to Undergo Preclinical Alzheimer’s Disease Testing? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/04/should-presidential-candidates-be.html