The Canadian Wildfires: A Call for Human Accountability and Action in Climate Change

Billows of black smoke blanket the sky, an enormous and all-consuming dark mass. Barrages of ferocious flames ignite the skyline as fires continue to rage and engulf the remains of the Canadian black spruce trees. Meanwhile, spells of yellow-orange haze descend into the United States causing air quality levels to reach what the Environmental Protection Agency describes as “unhealthy for all” [1]. With air quality-related health issues such as chronic bronchitis and decreased lung function on the horizon, natural disasters such as the Canadian wildfires spark concern about the impact of the environment on our quality of life [2]. The will of nature is out of human hands, yet as environmental disasters pose a health risk to our communities, our civilian duty begs the question: what can we do? 

A key distinction to appreciate when contextualizing a natural disaster is to recognize what is and what is not man-made. In the context of wildfires overall, some occur naturally by ignition from the sun’s heat or by a lightning strike. The spread of a wildfire is determined by weather conditions and topography [3]. High temperatures and little rainfall can prime vegetation to fuel the fire to burn faster uphill rather than downhill [4]. These factors are out of human control as wildfires are natural processes. Even though we have the resources to put out these wildfires, sometimes we do not because wildfires are required for the growth and survival of an ecosystem. For example, Yellowstone National Park allows lightning-ignited wildfires to burn because they promote biodiversity as new habitats are generated for differing species and prevent the accumulation of too much leaf litter and deadfall. Controlled fires such as these do not pose a threat to human health, and eventually go out on their own according to the Yellowstone National Park Service [5]. Even Canadian wildfires are common occurrences in the spring and summer as lightning is usually responsible for about half of all fires in Canada as well as 85% of the area burnt each year. However, the other half is where humans must be held accountable [6]. 

Canada’s record-breaking wildfire season has resulted in culpability being placed on humans who are at fault for this year’s extremities. Some explanations are indisputable such as this year’s early start to wildfire season being the result of unattended campfires and off-road vehicle accidents. One fire in the New Brunswick province began when an all-terrain vehicle caught fire on a trail, igniting the surrounding area [7]. In these situations, the responsibility rests on individuals such as 68% of wildfires between 2017 and 2022 being human-caused in the province of Alberta [8]. Though, this does not explain the full story behind Canada’s historical wildfire season in 2023. [9]. In addition to human error, climate change is a frequently cited cause for several intense weather events, including this year’s Canadian wildfires [10]. 

Climate change is a man-made, systematic problem, and we must acknowledge how human behavior has contributed to its development. Climate change is exacerbated by the increase in human emissions of heat-trapping greenhouse gasses such as water vapor, carbon dioxide, and methane [11]. On a broader scale, agriculture, oil, and gas operations are major sources of methane emissions that cause the global warming of the earth. Humans are responsible for virtually all of global heating over the last 200 years and as a result of human activity, the last decade was recognized as the warmest on record [12]. In terms of wildfires, climate change can shift factors like temperature, soil moisture, and aridity of forest fuel in favor of more extreme wildfires. For example, increasing temperatures can create conditions of extended drought and persistent heat that can lead to more active and longer wildfire seasons similar to the ones Canada has seen this year [13]. As the climate continues to change, research suggests that the fire season will worsen in coming decades such as parts of Quebec and Ontario will likely see the number and size of wildfires increase [14]. This is a reminder that Canadian wildfires are not a one-time occurrence if we are not proactive in working to combat climate change 

Recognizing the role of human action as the reason for the increase in the frequency and severity of natural disasters such as wildfires is important for taking accountability and working towards finding a solution. On an individual basis, the average carbon footprint in the U.S. is about 14.6 tons of CO2, more than double the global average of 6.3 tons [15]. To preserve a livable climate, this number must go down to about 2.0 to 2.5 tons by 2030. The United Nations recommends initiatives such as lowering heating and cooling, using more energy-efficient appliances, making electric rather than gas transportation choices, and eating more vegetables towards reducing emissions [15]. Though, the difficult truth is that it is inconvenient to sacrifice your car to ride the bus at designated times. Making eco-friendly choices, rather than fiscal ones can be a costly downside for consumers [16]. It is also inconvenient to replace every household appliance with renewable energy. By no means, is reducing our carbon footprint an easy task, especially when our change won’t make the impact needed to reverse the overbearing issue of climate change. Regardless, taking individual action still holds great value in influencing our surrounding community, and most importantly, reminding us of our self-worth. 

On a global scale, one action may be insignificant, yet the same effort creates a fundamental commitment toward confronting climate change. The dedication to lowering our carbon footprint creates meaning by placing value on the quality of human life including our own. Consider the act of choosing to place a plastic cup in the recycling bin rather than the nearest trash can. For the person waiting to throw their trash away behind you, the moments of thought as you decide which bin to dispose of your items in signifies that individual action does count for something, and possibly, their decision will too. In this instance, recycling contributes towards lowering greenhouse emissions by more than 50% by reducing the energy needed to extract or mine virgin materials [17]. For myself, offering to carpool with my friends or asking them to drive creates meaning by addressing the reality of climate change and how our small group of people can still be part of a movement without sacrificing too much comfort. Carpooling both on the way to work and home can potentially decrease 22%-28% of CO2 emissions, and these numbers remind us that the smallest actions are still relevant contributions in decreasing emissions as they build valuable attitudes around change [18]. These choices are much more than their numerical impact on carbon emissions but are essential in highlighting the importance of individual action under the umbrella of mentality.

Gnawing dread, coursing fear, and racing hearts are some of the unforgettable feelings induced by the sight of orange shrouds above the skies of our homes. The unfortunate reality is that these emotions may become familiar as wildfires are predicted to intensify as a consequence of climate change. While climate change certainly isn’t responsible for every single disaster, it is undeniable the great amount of influence it has on our environment with wildfires being just one example [19]. It is fair to say that without change, the future holds other unpredictable, terrifying moments that could jeopardize the future of humanity. Taking accountability is the first step in the grand scheme of trying to fix our own mistakes. The next is to put the first foot forward in understanding that our personal choices carry a priceless value to individuality and others. Recognizing the importance behind our actions is essential before confronting larger, systematic causes. Collective individual contribution is the effort needed to successfully challenge the companies responsible for the majority of emissions [20]. We all have a part to play, and it has to start with ourselves. 

References: 

1. Hauser, C., & Moses, C. (2023, July 17). Smoke pollution from Canadian wildfires blankets U.S. cities, again. The New York Times. 

https://www.nytimes.com/2023/07/17/us/wildfire-smoke-canada-ny-air-quality.html 2. US Department of Commerce, N. (2021, July 2). Why Air Quality is important. National Weather Service. https://www.weather.gov/safety/airquality 

3. Moore, A. (2021, December 3). Explainer: How wildfires start and spread. College of Natural Resources News. https://cnr.ncsu.edu/news/2021/12/explainer-how-wildfires-start-and-spread/ 4. Wildfires. Education. (n.d.). 

https://education.nationalgeographic.org/resource/wildfires/#:~:text=Wildfires%20can%20start%20wit h%20a,primed%20to%20fuel%20a%20fire 

5. U.S. Department of the Interior. (n.d.). Fire. National Parks Service. 

https://www.nps.gov/yell/learn/nature/fire.htm 

6. Bilefsky, D., & Austen, I. (2023, June 10). What to know about Canada’s exceptional wildfire season. The New York Times. 

https://www.nytimes.com/article/canada-wildfires-what-to-know.html#:~:text=While%20wildfires%20 are%20common%20in,remote%20and%20sparsely%20populated%20areas 

7. Owens, B. (2023, June 9). Why are the Canadian wildfires so bad this year?. Nature News. https://www.nature.com/articles/d41586-023-01902-4 

8. 2022 Alberta wildfires seasonal statistics. (n.d.). 

https://open.alberta.ca/dataset/db7cdfde-7ccd-4419-989f-09f8bb28da22/resource/afd19465-f0e9-426b -b371-01569145aa86/download/fpt-alberta-wildfire-seasonal-statistics-2022.pdf 

9. Livingston, I. (2023, June 16). Analysis | why Canada’s wildfires are extreme and getting worse, in 4 charts. The Washington Post. 

https://www.washingtonpost.com/weather/2023/06/12/canada-record-wildfire-season-statistics/

10. Kelly, M. (2023, June 19). What Canadian wildfires signify for climate, Public Health. Dartmouth. https://home.dartmouth.edu/news/2023/06/what-canadian-wildfires-signify-climate-public-health#:~: text=Unlike%20wildfires%20in%20the%20West,to%20global%20warming%2C%20Mankin%20said 11. United Nations. (n.d.-b). What is climate change?. United Nations. 

https://www.un.org/en/climatechange/what-is-climate-change 

12. What is your carbon footprint?. The Nature Conservancy. (n.d.). 

https://www.nature.org/en-us/get-involved/how-to-help/carbon-footprint-calculator/ 13. Wildfires and climate change. Center for Climate and Energy Solutions. (2023, July 14). https://www.c2es.org/content/wildfires-and-climate-change/ 

14. Wang, X., Swystun, T., & Flannigan, M. D. (2022). Future wildfire extent and frequency determined by the longest fire-conducive weather spell. Science of The Total Environment, 830, 154752. https://doi.org/10.1016/j.scitotenv.2022.154752 

15. United Nations. (n.d.-a). Actions for a healthy planet. United Nations. 

https://www.un.org/en/actnow/ten-actions#:~:text=Eating%20more%20vegetables%2C%20fruits%2C %20whole,energy%2C%20land%2C%20and%20water 

16. Ofei, M. (2023, May 25). Why sustainable products are more expensive (and how to save money). The Minimalist Vegan. 

https://theminimalistvegan.com/why-are-sustainable-products-expensive/#:~:text=So%20yes%2C%20s ustainable%20products%20are,the%20cost%20of%20going%20green 

17. Climate change, recycling and waste prevention. Climate change, recycling and waste prevention from King County’s Solid Waste Division - King County. (n.d.). 

https://kingcounty.gov/depts/dnrp/solid-waste/programs/climate/climate-change-recycling.aspx#:~:tex t=Recycling%20helps%20reduce%20greenhouse%20gas,extracting%20or%20mining%20virgin%20mate rials 

18. Bruck, B. P., Incerti, V., Iori, M., & Vignoli, M. (2017). Minimizing CO2 emissions in a practical daily carpooling problem. Computers & Operations Research, 81, 40–50. 

https://doi.org/10.1016/j.cor.2016.12.003 

19. Environmental Protection Agency. (n.d.). Climate Change Indicators: Weather and Climate. EPA. https://www.epa.gov/climate-indicators/weather-climate#:~:text=Rising%20global%20average%20tem perature%20is,with%20human%2Dinduced%20climate%20change. 

20. Ekwurzel, B., Boneham, J., Dalton, M. W., Heede, R., Mera, R. J., Allen, M. R., & Frumhoff, P. C. (2017). The rise in global atmospheric CO2, surface temperature, and sea level from emissions traced to major carbon producers. Climatic Change, 144(4), 579–590. 

https://doi.org/10.1007/s10584-017-1978-0

Family Pharmaceuticals – The Ethics of Family Pharmacists

Many of us have encountered a friend who shares a “medical hack” when they reference that distant family member –– an uncle or a cousin –– who can prescribe them whichever medication they choose. That friend may rant or rave that whenever they are sick, “amoxicillin” or any sort of antibiotic is their panacea which cures even the most stringent of colds. However, I do not utilize the word colds lightly as that is a viral infection and many times, these medications are not utilized with the backing of the rigorous diagnostic process that a clinician performs as part of patient care. Rx has now effectively become through the family tree; instead of having the protective gutter guards that prevent one from unnecessarily taking medication, access has been expanded. This has both beneficial and detrimental impact on patient care and therefore has serious ethical implications. These implications cannot be understood without laying a simple foundation: who in the medical system is eligible to prescribe and can be deemed a “prescriber,” and what legislative stipulations and ethical obligations govern that ability? Furthermore, with the understanding of prescriptive authority, an ethical scenario, and then some legislative context, one can understand that the ethical guidelines that have been established are clear, but need additional reinforcements. 

Prescriptive authority is an area of healthcare that has seen accelerated changes within recent years through the growth of physician assistants (PAs) and nurse practitioners (NPs) which have a scope of practice that has expanded and evolved over time [1]. Physicians with the highest degree of prescriptive authority are those with a Doctor of Medicine (MD) or a Doctor of Osteopathic Medicine (DO) designation as they are able to prescribe medications, including controlled substances which include medications such as opioids, stimulants, depressants, hallucinogens, and anabolic steroids [1]. Furthermore, with a Drug Enforcement Agency (DEA) license, these physicians are able to prescribe Schedule II to V medications, which are narcotics and controlled substances. The advent of the first physician assistants class formed in 1965 saw the advent of a novel healthcare professional seeking to fill the gap left by the shortage of physicians. Although state law varies, these healthcare professionals lack complete autonomy as they must be overseen by a physician. Furthermore, the advent of nurse practitioners were seen to deal with the lack of access to pediatric care [1]. Unlike PAs, NPs have greater prescriptive privileges in many states and do not require physician supervision as they are even allowed to prescribe controlled substances. With the increase in PA and NP professionals in recent years, the progressive increase in prescriptive authority has led to changing state laws to increase their autonomy in order to improve healthcare accessibility [1]. 

Having established those who are able to prescribe medication, diving into a simple ethical scenario is foundational for understanding the ethics of family pharmacists –– if your spouse or partner got a skin infection and needed an antibiotic, is it ethical for you to prescribe that medication to them [2]? There are serious ethical implications and under certain circumstances, it can be argued that it is ethically permissible to treat one’s family members, but in other situations it is not appropriate. Defining the ethical boundary here is incredibly important as it will come with context and provides a framework for caregivers. In emergency situations, such as a cardiopulmonary resuscitation, it is clear that a physician should treat their immediate family member without question as the emergency situation would require them to act to save a life [2]. However, this is not the situation that most ethical concerns would arise; those matters occur when symptoms are nonemergent, when a disease is out of the scope of one’s clinical skills allowing for improper diagnosis. 

The Council on Ethical and Judicial Affairs of the American Medical Association determined that if the condition is only a short-term and minor problem, such as a skin infection, it is permissible for a physician to treat family members. The ethical boundary here is that the condition must be short-term, whereas long-term treatments are not permissible [3]. Furthermore, in their analysis of 400 medical staff physicians, they found that 99% of physicians had received requests from family members for medical advice or therapy with 83% of respondents reporting that they had prescribed medication for a family member, and 72% reporting  that they had conducted a physical examination. This evidence shows that physicians are utilized by their families as sources of “discounted” medical care. The serious implication and problem with treating family members is the potential for personal relationships to impact treatment and determination of the optimal course of therapy for a patient to undergo [2]. In Drs. Korenman and Mramstedt’s article published in the The Western Journal of Medicine, they argued that several conditions must be met for physicians to prescribe to family members: the ailment is within the physician’s expertise, the physician should not accept any limitations on access to patient’s medical records, physicians should know enough about the method of therapy to feel comfortable with it suse, and follow-up is essential for the treatment to be successful.

These guidelines are solid, but they do not provide enough specificity into the core issue of family pharmacists –– the implication that prescriptions can be made for unnecessary or improperly used medication [4]. In some states, it is completely illegal and rightfully so for physicians to prescribe controlled substances to themselves or other immediately family members, such as North Carolina Rules 21 NCAC 32 B.1001, 32S.0212, and 32M.0109; however, the prescription medications are still legal to be prescribed to family members [5]. Many of these prescriptions can be made for patients who are receiving treatment for conditions they may not have been properly diagnosed. For instance, the friend who has a viral infection or a cold but claims that azithromycin is a panacea for all of their problems. A family member may give them an “Rx” for this medication to treat a condition which it will not even remotely improve and as a result, that patient who is effectively self-prescribing is causing greater damage and the potential generation of antibiotic resistant bacteria [6]. 

The ethics here are clear, but the legislation is not legally binding enough. The ethical scenarios essentially establish that patients must be in non-life threatening scenarios within a physician’s scope of reference and to where all diagnostic ability can be used. These situations are often not the contexts in which these physicians are prescribing medications, and many times these guidelines established by the American Medical Association are not adhered to [7]. The ethics here are clear, but the legislation fails to protect patients, even when they believe that a family member could be protecting them. 

Greater legislative constraints must be placed on “family pharmacists.” That is where there are largely restrictions on “controlled substances” for prescribers, many other prescription medications can have harmful effects beyond just addiction which is the reason for the controlled element of many of these medications [8]. Furthermore, there needs to be some legal protection in place for physicians. In order to prescribe to family members, they must go through higher levels of approval, such as an ethics board where documentation of treating immediate friends and family members can be reviewed following treatment. The proposed regulatory process is not a slowing down of treatment, but that all of the diagnostic processes with a justification of the treatment plan must be defended under an annual review. Failure to disclose these treatments should potentially result in loss of licensure. 

This may potentially seem strict and stringent to many, but I feel that given the history of the opioid epidemic and the potential negative effects of unmitigated family pharmacies that there must be additional safeguards in place. The system that I have proposed is online, the specificity of it is broad, but its intention is multi-pronged: regulate family pharmacies, protect patients, and maintain efficiency. I do not want this potential legislative action to hinder the ability of patients to receive care, but there must be a higher level of scrutiny placed upon these situations in order to guarantee that physicians are marking ethical and accurate decisions as bias is inherent in these treatment plans. I believe that the access to medicine provided through these close connections to providers can be of great benefit to patients, but that does not mean that it cannot also be of great harm. To mitigate and minimize this harm is an obligation on part of governments who are aware of these backdoor prescriptions. 

Sources: 

1) Zhang P, Patel P. Practitioners And Prescriptive Authority. [Updated 2022 Sep 19]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK574557/

2) Korenman, S. G., & Bramstedt, K. A. (2000). Your spouse/partner gets a skin infection and needs antibiotics: is it ethical for you to prescribe for them? Yes: it is ethical to treat short-term, minor problems. The Western journal of medicine, 173(6), 364. https://doi.org/10.1136/ewjm.173.6.364 

3) La Puma J, Stocking CB, La Voie D, Darling CA. When physicians treat their own families: practices in a community hospital. N Engl J Med 1991;325: 1290-1294. 

4) Latessa, R., & Ray, L. (2005). Should you treat yourself, family or friends?. Family practice management, 12(3), 41–44. 

5) Resources & Information. 2.2.3: Self-Treatment and Treatment of Family Members. (n.d.). https://www.ncmedboard.org/resources-information/professional-resources/laws-rules-position-statements/position-statements/self-treatment_and_treatment_of_family_members 

6) What happens when you write rx’s for relatives | mdlinx. (n.d.). https://www.mdlinx.com/article/what-happens-when-you-write-rx-s-for-relatives/lfc-3094  

7) Virtual Mentor. 2012;14(5):396-397. doi: 10.1001/virtualmentor.2012.14.5.coet1-1205. 

8) The controlled substances act. DEA. (n.d.). https://www.dea.gov/drug-information/csa  

THERAPEUTIC NIHILISM IN DISORDERS OF CONSCIOUSNESS CARE AND THE RIGHT TO LIVE

The ambiguous mystery of consciousness that relates our subjective phenomenal experiences to an objective reality has puzzled the human mind since antiquity. From as early as the ancient Greeks to the 21stcentury, the concept of consciousness has generated numerous inquiries and theoretical propositions in the divergent fields of philosophy and neuroscience [1]. Alas, the concept of consciousness is ill-defined across time and culture given the juxtaposing nature of the term in both the metaphysical and scientific sense. In the philosophical text A Treatise of Human Nature, the Scottish philosopher David Hume described consciousness as “nothing but a bundle or collection of different perceptions, which succeed each other with an inconceivable rapidity, and are in perpetual flux and movement” [2]. In his psychoanalytic theory, the Swiss psychiatrist Carl Jung characterized consciousness as “the function or activity which maintains the relation of psychic contents to the ego” [3]. The French cognitive neuroscientist Stanislas Dehaene explained consciousness in his Global Neuronal Workspace Theory as a “global information broadcasting within the cortex [that] arises from a neuronal network whose raison d’être is the massive sharing of pertinent information throughout the brain” [1, 4]. These definitions, among many others, are nevertheless insufficient to explain consciousness if isolated on their own unless they are synthesized into a continuum of interwoven ideas that can account for the heterogeneous nature of consciousness [1]. 

Despite the dispute among historical and contemporary thinkers on the questions of consciousness and its neural correlates, the essence of each and every argument is fundamentally rooted in either the “easy” or “hard” problems of consciousness, as formulated by the Australian philosopher David Chalmers [5]. The “easy” problem seeks to identify mechanistic explanations for the various cognitive phenomena (e.g., perception, learning, behavior) resulting from the underlying biophysical processes of the brain. On the other hand, the “hard” problem accounts for why there is an association between such phenomena and consciousness [6]. However, the objective of the discussion herein is not to individually distinguish and comprehensively assess the myriad theories of consciousness. Instead, the concept of consciousness and its distinguishing features are considered in the context of clinical patients who suffer from disorders of consciousness (DOC), in which altered levels of consciousness has presented a neuroethical challenge in evaluating the life and death of DOC patients, particularly when aspects of their inherently intrinsic values are pathologically compromised to render them in a state of extreme vulnerability [7]. 

In the clinical context, consciousness is precisely conceptualized according to the Aristotelian formulation of wakefulness and awareness, wherein the state of consciousness is evaluated on the basis of arousal (e.g., eye-opening) and the ability to react to external stimuli (e.g., visual tracking), respectively [1]. Specifically, the elements of wakefulness and awareness encapsulate the ensuing features as the core indicators of consciousness: distinct sensory modalities, spatiotemporal framing, intentionality, dynamicism, short-term stabilization, and an integration of all components of the conscious experience [8]. The extent of the two said elements, however, varies according to the neurophysiological conditions of the DOC patient, which factors in variables such as brainstem reflexes, functional communication, language, and fMRI/EEG evidence of association cortex responses. Depending on the results of these testing variables that relies on the use of dichotomic binary communication paradigms (i.e., yes/no or on/off), the patients’ condition can thus be diagnosed, which includes, inter alia, coma, persistent vegetative state (PVS), unresponsive wakefulness syndrome (UWS), minimally conscious state (MCS), post-traumatic confusional state (PTCS), covert cortical processing (CCP), and locked-in syndrome (LIS) [1]. 

To begin the discussion on the neuroethics of patients with DOC, the controversial case of Terri Schiavo and her legacy ought to be taken into reflection [9]. In 1990, Schiavo was left in a vegetative state after suffering from a cardiac arrest, a symptom of hypokalemia induced by her eating disorder. From that point onward, Schiavo was in an eye-open state but was unaware of herself and her environment (a dissociation of awareness from wakefulness) for the next 15 years of her life until her death in 2005. Schiavo’s neurologist initially concluded that her condition was irreversible and that she was no longer capable of having emotions, which caused her spouse to request the removal of her feeding tube and any life-sustaining treatment. Schiavo’s parents were diametrically opposed to this decision because they held onto the belief that there was a possibility for neurological recovery and that Schiavo was still a sentient being. Both parties claimed to act in Schiavo’s best interest as the justified surrogate decision-maker, yet their familial conflict had ultimately gone to litigation, in which the verdict ruled in favor of Schiavo’s spouse. Upon close examination, the tragic outcomes of Schiavo’s case underscores several ethical violations in the medical, legal, and social realms in relation to end-of-life decision-making and the exercise of autonomy.

Recent developments in functional neuroimaging and neuroelectrophysiological methods have changed the ways through which DOC patients are diagnosed, prognosed, and treated. The most prominent revelation from such advancement is the high rates of misdiagnosis and inaccurate prognostication among DOC patients by clinicians, wherein cases of patients who are originally diagnosed as PVS are in reality reclassified as MCS upon neuroimaging procedures. In contrast to PVS patients, MCS patients are found to display both wakefulness and behavioral signs of rudimentary awareness. Ultimately, such misdiagnosis can be attributed to several factors such as sensorimotor impairments in the patient, or confirmation bias in the clinician. In turn, this creates epistemic risks because of limited certainty in DOC nosology [1]. Notwithstanding the promising potential of neuroimaging and similar neurotechnologies (e.g., brain-computer interfaces), the medical practice of neuroimaging itself poses an increasing degree of ethical tension due to the lack of informed consent from the DOC patient themselves as a requirement prior to undergoing neuroimaging. This is a challenge that is often highlighted in neuroimaging-driven DOC research, compounded with the disclosure of experimental results to the patient themselves or their family, which are deemed as imperative to mitigate miscommunications in patient-clinician relationships [10, 11]. 

Given that cognitive biases are a salient class of factors contributing to misdiagnoses in DOC, emphasis ought to be placed on the prevalence of ableist bias in influencing erroneous, monotonic judgments with respect to the neurological outcomes of DOC patients. Note that this particular issue is a byproduct of the disability paradox—a phenomenon that occurs when individuals with disabilities claim to experience a good quality of life despite the fact that many external observers perceive them as in a state of suffering [12]. As a result, prejudiced assumptions create a discrepancy between the actual wishes of the DOC patient and what others perceive as acceptable; oftentimes, the latter revolves around the belief that being in an unconscious state is worse than death [13]. Though in the event that the preference of the DOC patient is well-documented in regard to the best course of action to take when the patient is nonverbal or behaviorally disabled, the judgment of the clinician will not be a matter of importance. A study by Patrick et al., however, discovered that there exists a psychological discordance among DOC patients in which patients who initially expressed the belief that life is not worth living in such conditions still wished to undergo life-sustaining interventions. Hence, the implications of the ableist notion that “it is better to be dead than disabled” is not meant to be taken in the literal sense [14]. Fortunately, functional neuroimaging is indeed capable of unveiling residual consciousness and psychological continuity even if the apparent behavioral characteristics of the DOC patient suggests otherwise, as shown in a neuroimaging study by Owen et al. [15]. This scenario presents the common ethical problem in regard to the premature or uncertain termination of life-sustaining care for DOC patients based on the decision of moral agents such as a surrogate (e.g., the patient’s kin) or a third party (e.g., government), which may be ill-informed or morally absolutist at times [16]. 

Thus, upon careful consideration of such scenarios and the case of Schiavo, is it still morally permissible to withdraw artificial life support from DOC patients in the absence of informed consent or advance directives from the will of the patient themselves? While it is reasonable to argue that it is futile to continue maintaining the life of DOC patients given the lack of expected utility, this justification is heavily rooted in a deep sense of therapeutic nihilism—an aporetic belief toward the successful curing of a disease—that gave rise to a pessimistic outlook on the assessment of predicting the likelihood of meaningful recovery among DOC patients and their right to life-sustaining treatment from the view of clinicians. [13]. Evidently, with the patients’ best interest at stake, the ways through which patient outcomes are perceived under the lens of undue pessimism coupled with a saturated sense of self-fulfilling prophecy illustrate the negligence of DOC patients’ potential to recover and regain functional independence in the long-run. After all, behavioral recovery typically occurs beyond the minimum standard timeframe of 28 days during post-brain injury, as suggested in an observational study conducted by Giacino et al. on DOC patients with PVS/MCS [17]. Such empirical evidence, therefore, rejects the futility thesis in DOC care and underscores the risk of superimposing the beliefs and values of the observers onto the patient. Integrating prudence and fiduciary responsibility into the ethos of palliative care for DOC patients are thus relevant in the clear discernment of consciousness from the nonconscious state [1]. 

In recognizing the effects of pessimistic attitudes on clinical decision-making, the consequentialist argument of cost and health utilities in treating DOC patients is another antithetical statement toward preserving the life of DOC patients. Indeed, in some outlying cases, extensive care for patients with DOC may not necessarily result in favorable outcomes, irrespective of the duration and intensity of the treatments that are provided. In such circumstances, the harm-benefit analysis yielded problems such as significant emotional distress and financial losses for the families of DOC patients, as well as failing to protect the dignity and comfort of DOC patients as a consequence of undergoing continuous painful treatments that may seem to have minimal benefits, compounded with the fact that these resources are scarce in most instances. Additional opportunity costs that may incur on the families of DOC patients include renouncing education or employment opportunities to act as caregivers for their beloved [1]. Hence, the continuation of sustaining the life of DOC patients under such criteria cannot possibly maximize the cost and health utilities of the patient and their family. 

To balance these potential harms, however, it ought to be noted that the proclivity for utility maximization is in conflict with the contractual obligation of the clinician in improving the care of DOC patients without resorting to abandonment and risk aversion and guaranteeing them the value of human life. The life of a human being and the act of protecting its existential stature is what translates to having dignity in lieu of death, such that the phrase “dying with dignity” has been diluted in meaning and is contradictory in this interpretation of dignity [14, 15]. Furthermore, to withhold distributive justice in the clinical setting to align with democratic principles, resources ought to be allocated in a fair, unbiased manner to ensure equity in access to appropriate treatments for DOC patients that are also affordable for all to offset the inclination among clinicians to allocate rehabilitative resources to patients with a higher chance of recovery than those with a poor course of prognosis [13]. Therefore, it is a necessary risk to provide life-sustaining treatment even to DOC patients with a low likelihood of recovery and survival, for doing so will lead to further advancements in improving DOC care and make medical progress in overcoming technical limitations and understanding the complexity of DOC for posterity. 

On the subject of personhood, however, many observers who are under the influence of therapeutic nihilism tend to perceive DOC patients as an empty vessel that is devoid of personhood given their loss of cognitive capacities, which are claimed to be indispensable for consciousness to be constituted. Such perceptions are merely natural considering the hypercognitive nature of postmodern Western societies and cultures, wherein the deprivation of certain capacities that the majority deems as important has separated those who are unworthy of care and attention from those who are worthy. Nevertheless, regardless of whether or not personhood is ascribed to patients with DOC, the worth of a human life should not be evaluated on the basis of the unlikeness of the human mind, for all persons ought to be respected in the name of equality and solidarity as fundamental moral sentiments to maintain a just legal and healthcare system, especially toward those who are in their most vulnerable state [14, 18].

A reinforcing assertion on defending the continual existence of personhood claims that consciousness is not an essential prerequisite for the acknowledgement of one’s identity, hence the intrinsic values of DOC patients are retained to qualify them as individual persons in spite of their incompetence to communicate or act in accordance with their freedom of will [19]. Even more so, the implementation of disability rights perspectives into the social analysis and lawful policymaking surrounding DOC patients proclaims that individual identities are not singularly characterized by working cognitions and emotions. As opposed to basing the identity of DOC patients on their medical conditions, their identity is constructed around the notion that their disabling attributes as a result of DOC is an inalienable component of their overall identity. Indeed, disability is only transparent when life-sustaining treatments are denied to DOC patients as a reflection of the institutional failure to both accommodate those who are in urgent need of care and withhold constitutional and federal civil rights protections, specifically in regard to the Americans with Disabilities Act (ADA) that ought to be applied universally [20, 21, 22]. 

Even in the depths of inescapable nihilism in managing DOC care, ethics must prevail in remembrance of the principle of in dubio pro vita—"when in doubt, favor life” [23]. In considering the complex diagnostic and therapeutic difficulties in conjunction with uncertain prognostications for patients with DOC, the health prospects of the patient are at a constant risk due to the epistemological interstice between current understandings of consciousness and the behavioral conditions of DOC patients [10]. Therefore, to overcome the existing state of DOC care that is characterized by issues of informed consent, cognitive biases, futility-inspired pessimism, unjust resource allocations, negligence of personhood, and various unknown risk factors, it demands the deployment of effective medical and legal protocols and ethical guidelines for pragmatic clinical decision-making. As such, the traditional beliefs in the practices of medicine and law must be challenged to preserve the life of DOC patients alongside their personal identity, dignity, freedom of will, and most crucially, the right to live at the heart of humanity.

References 

1. Young, M. J., Bodien, Y. G., Giacino, J. T., Fins, J. J., Truog, R. D., Hochberg, L. R., & Edlow, B. L. (2021). The neuroethics of disorders of consciousness: a brief history of evolving ideas. Brain, 144(11), 3291-3310. 

2. Hume, D. (2009). A treatise of human nature. (P.H. Nidditch, Ed.). Clarendon Press. (Original work published 1739-40) 

3. Jung, C. G. (1921). Psychological Types. In Collected Works (Vol. 6). Princeton, NJ: Princeton University Press. 

4. Mashour, G. A., Roelfsema, P., Changeux, J. P., & Dehaene, S. (2020). Conscious processing and the global neuronal workspace hypothesis. Neuron, 105(5), 776-798. 

5. Chalmers, D. J. (1995). Facing up to the problem of consciousness. Journal of consciousness studies, 2(3), 200-219. 

6. Mills, F. B. (1998). The easy and hard problems of consciousness: A Cartesian perspective. The Journal of mind and behavior, 119-140. 

7. Roskies, A. (2021, March 3). Neuroethics. Stanford Encyclopedia of Philosophy. Retrieved January 8, 2023, from https://plato.stanford.edu/entries/neuroethics/ 8. Farisco, M., Pennartz, C., Annen, J., Cecconi, B., & Evers, K. (2022). Indicators and criteria of consciousness: ethical implications for the care of behaviourally unresponsive patients. BMC Medical Ethics, 23(1), 30. 

9. Weijer, C. (2005). A death in the family: reflections on the Terri Schiavo case. CMAJ, 172(9), 1197-1198. 

10. Young, M. J., Bodien, Y. G., & Edlow, B. L. (2022). Ethical considerations in clinical trials for disorders of consciousness. Brain Sciences, 12(2), 211. 11. Istace, T. (2022). Empowering the voiceless: disorders of consciousness, neuroimaging and supported decision-making. Frontiers in psychiatry/Frontiers Research Foundation (Lausanne, Switzerland)-Lausanne, 2010, currens, 13, 1-10. 12. Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: high quality of life against all odds. Social science & medicine, 48(8), 977-988. 

13. Choi, W. (2022). Against Futility Judgments for Patients with Prolonged Disorders of Consciousness. 

14. Golan, O. G., & Marcus, E. L. (2012). Should we provide life-sustaining treatments to patients with permanent loss of cognitive capacities?. Rambam Maimonides Medical Journal, 3(3). 

15. Owen, A. M., Coleman, M. R., Boly, M., Davis, M. H., Laureys, S., & Pickard, J. D. (2006). Detecting awareness in the vegetative state. science, 313(5792), 1402-1402.

16. Fins, J. J. (2005). Clinical pragmatism and the care of brain damaged patients: toward a palliative neuroethics for disorders of consciousness. Progress in brain research, 150, 565-582. 

17. Giacino, J. T., Sherer, M., Christoforou, A., Maurer-Karattup, P., Hammond, F. M., Long, D., & Bagiella, E. (2020). Behavioral recovery and early decision making in patients with prolonged disturbance in consciousness after traumatic brain injury. Journal of neurotrauma, 37(2), 357-365. 

18. Post, S. G. (2000). The moral challenge of Alzheimer disease: Ethical issues from diagnosis to dying. JHU Press. 

19. Foster, C. (2019). It is never lawful or ethical to withdraw life-sustaining treatment from patients with prolonged disorders of consciousness. Journal of Medical Ethics, 45(4), 265-270. 

20. Forber-Pratt, A. J., Lyew, D. A., Mueller, C., & Samples, L. B. (2017). Disability identity development: A systematic review of the literature. Rehabilitation psychology, 62(2), 198. 

21. Rissman, L., & Paquette, E. T. (2020). Ethical and legal considerations related to disorders of consciousness. Current opinion in pediatrics, 32(6), 765. 22. Chua, H. M. H. (2020). Revisiting the Vegetative State: A Disability Rights Law Analysis. 

23. Pavlovic, D., Lehmann, C., & Wendt, M. (2009). For an indeterministic ethics. The emptiness of the rule in dubio pro vita and life cessation decisions. Philosophy, Ethics, and Humanities in Medicine, 4(1), 1-5.

A NEUROETHICAL DISCOURSE ON THE APPLICATION OF OPTOGENETICS FOR MEMORY MODIFICATION

As an emerging neuromodulation tool, optogenetics affords the capability of manipulating neuronal activities of genetically defined neurons using light. In principle, optogenetics offers scientific insights into deciphering the complexity of various behavioral states and the neural pathways that underpin normal and abnormal brain functions with therapeutic applications [1]. In fact, human clinical trials have been initiated in utilizing optogenetics to treat retinitis pigmentosa to restore vision, and animal models have been extensively used in optogenetics studies to develop therapies for a myriad of nervous system disorders as an alternative to deep brain stimulation (DBS) [2]. To understand the inner workings of this novel neurotechnology, the basic neurobiological basis of synaptic communication between neurons must be briefly elaborated. Fundamentally, Na+ions flow into neurons until the threshold potential is reached with sufficient voltage to elicit an action potential along the axons of successive depolarized neurons to transmit information by means of neurotransmitter release at the synapses. For ions to passively travel into the neurons across the cell membrane for activation or deactivation requires the gated ion channels to be opened or closed, respectively, which can be done by applying an external stimulus such as temperature and ligand molecules. Alternatively, protein pumps can also facilitate the inward flow of specific ions via active transport under similar stressors. Neurons eventually become hyperpolarized as K+ions begin to flow outward to inhibit the signal until the threshold is reached again from the resting potential, all of which are done iteratively [3]. 

The discovery of optogenetics has thus introduced light-gated channels and pumps as a new mechanism for controlling synaptic communication among neurons. Light-sensitive proteins called opsins are the genes responsible for encoding light-gated channels and pumps, which are typically found in microbial species of archaea, bacteria, and fungi—the source from which Type I opsin genes are derived [1]. Opsins are subsequently cloned to be expressed in a target population of neurons that lack light-gated channels and pumps via viral vectors (i.e., adeno-associated viruses (AAV) or lentiviruses (LV)), thereby enabling the control and regulation of neuronal activities of various neural circuits at the supramacroscopic scale in real time with light through the insertion of an optical fiber. Upon the illumination of light, neurons can either be excited or inhibited, depending on the nature of the optogenetic proteins that are neuronally expressed in accordance with the functions that the researcher intends to mediate for individual neurons [2]. Channelrhodopsin-2 (ChR2) is a light-gated cation channel protein that can excite neurons when illuminated with blue light at regular pulses, which causes the inward flow of cations (e.g., Na+, Ca2+, H+) to increase the rate of action potentials [4]. To inhibit the activity of neurons, the yellow-light sensitive proton pump archaerhodopsin-3 (AR3) is used, wherein protons are transported out of neurons to decrease the rate of action potentials. Similarly, wild-type halorhodopsin (NpHR) is a Cl ion pump that also engages in neuronal inhibition in response to the continuous illumination of yellow light to sustain neurons in a hyperpolarized state [5]. 

Given the bidirectional modality of optogenetics in controlling specific neuronal ensembles by means of regulating the movement of ions to facilitate or prevent synaptic communication, one application of optogenetics extends to its potential for modifying memories as a form of improved and versatile memory modification technology (MMT). Pre-existing MMTs include DBS along with pharmacological agents (i.e., propranolol or mifepristone), all of which can alter the brain via external means. However, due to the indiscriminate spread of electrical currents to neighboring nerve fibers of targeted cells in DBS and the poor temporal precision in the administration of pharmacological agents, optogenetics are fortunately capable of compensating these practical limitations [6]. The spatiotemporal selectivity and precision of optogenetics are best illustrated when considering the diversity of light-sensitive proteins that can be expressed in correspondence to the different cell types in the central nervous system (CNS), some of which are genetically defined such that they are restricted to limited optogenetic proteins based on the type of neurotransmitters they secrete or the direction of their axonal projections [2]. 

Therefore, optogenetics renders the ability for memory modification in such a manner that specific memories, whether they are newly formed or well-consolidated, can be activated or deactivated in their respective engrams by manipulating the activities of targeted neurons in the hippocampal region of the brain, primarily at the dentate gyrus (DG) where memories are initially formed from the merging of sensory modalities [7, 8]. For example, Liu et al. has demonstrated the implantation of de novo false memories into mice through optogenetic manipulation using ChR2 aided by contextual fear conditioning [9]. Another memory modification experiment using optogenetics conducted by Guskjolen et al. has surprisingly shown that lost, inaccessible memories in infant mice due to infantile amnesia can be recovered by optogenetically targeting hippocampal and cortical neurons responsible for encoding infant memories, ensued by reactivating the ChR2-labeled neuronal ensembles when the infant mice reached adulthood after a period of three months [10].

Additional applications of optogenetics in the context of memory modification includes enhancing the cognitive capacity for memory, changing the valence of a memory (from negative to positive, and vice versa) without distorting the content, and treating memory impairments that are characteristic of conditions such as Alzheimer’s disease (AD) and post-traumatic stress disorder (PTSD) in clinical patients [6]. Notwithstanding the futuristic promise of optogenetics, the apparent harm of manipulating select memories in humans to various extents on demand is of equal relevance when considering the collective ramifications of this novel yet ambivalent neurotechnology. The neuroethical flaws of using optogenetics for memory modification are thus worthy of being discussed in detail. 

Of similar nature to many revolutionary technologies such as the CRISPR/Cas9 system for genome editing, safety risks present a limitation to the use of optogenetics for memory modification applications given its invasive nature—requiring the injection of viral vectors into the brains of experimental subjects for the in vivo delivery of optogenetic proteins [11]. Furthermore, deep brain optogenetic photostimulation also requires tethered optical fibers or other forms of implants to be surgically inserted into the brain to provide a light source, which may cause tissue damage, ischemia, and infections as with many invasive neurosurgeries [12]. A non-invasive approach in the utilization of optogenetics, interestingly, has been developed by Lin et al. using an engineered red-shifted variant of ChR known as red-activable ChR (ReaChR) that was expressed in the vibrissa motor cortex of mice. With the penetration of red light through the external auditory canal, neurons can subsequently be optically activated to drive spiking and vibrissa motion in mice to enable transcranial optogenetic excitations with an intact skull [13]. 

Nevertheless, safety risks cannot be easily dismissed in a premature manner in the event that optogenetic manipulations lead to off-target behavioral or emotional effects, wherein unpredictable network changes may occur in areas outside of the targeted optogenetic activation or deactivation zone [14]. For example, episodic memories are not solely distributed in the hippocampus; the entire system also consists of surrounding brain structures of the medial temporal lobe including the perirhinal and entorhinal cortices in conjunction with structurally connected sites (e.g., thalamic nuclei, mammillary bodies, retrosplenial cortex). Targeting a set of hippocampal neurons that is known to encode a specific memory may also induce unforeseeable changes, for it is presumed that their function is not solely exclusive to memory encoding. Moreover, since the off-target effects pertaining to the optogenetic modification of memory have not been heavily analyzed in the neuroethical literature, it adds the weight of uncertainties regarding safety issues. The level of uncertainties is further elevated by the risk of long-term expression of optogenetic proteins in the mammalian brain with unknown consequences [6]. 

Beyond safety issues and technical limitations of optogenetics, attention is now shifted toward issues unique to optogenetics that may or may not be shared among pre-existing MMTs in the context of memory modification, notably in regard to erasing one’s unwanted memories which are reasonable targets for optogenetic interventions. The first argument concerns the problem of abandoning one’s moral obligations in hypothetical scenarios where the witnesses of a crime wish to erase their memories of the event through optogenetics [15]. While doing so is aligned with one’s right to personal choice if the witnesses find the crime to be far too upsetting to remember, it is not within the interests of society to erase such memories which are useful as testimonies during criminal prosecutions, even if the memories prove to be unreliable. Therefore, it is a moral obligation for witnesses to retain their memories for consequentialist reasons (i.e., preventing future crimes and exploitation) and withholding justice, and the same idea is applicable to the victims of a crime. From the perspective of criminal offenders, furthermore, it is also their moral obligation to retain the memories of their unlawful actions without optogenetic interventions even if they develop a guilty conscience. Otherwise, it would be deemed as an inappropriate moral reaction and responsibility needs to be held nevertheless on the part of the criminal offender if their memories are erased [6, 7]. 

Retaining memories sustained from traumatic experiences such as discrimination or abuse is also justified in the sense that traumatic memories may have a subtle influence on cultivating one’s personality and values [6]. Children who experienced childhood trauma are found to exhibit elevated levels of empathy as adults relative to children who did not have such experiences, as shown by Greenberg et al. [16]. In turn, having undergone traumatic experiences will ultimately motivate affected individuals to seek and initiate systemic changes in society by means of activism, for instance, to mitigate the root cause of their experienced trauma [6]. To further justify the means of relying on the traumatic memories of individuals to achieve the ends of society’s welfare in the absence of optogenetic interventions, it ought to be reiterated that without such means, social relations among members of society will remain in an oppressive and unspontaneous condition, such that individuals will not be inured to the sufferings of others but live in a continuous state of mass oblivion [15]. Using optogenetics to erase traumatic memories will thus nullify the motivational impulses and humaneness that are shared among affected individuals and most significantly, it has the potential to distort the trajectory of one's personality and values to a certain extent, especially when the valence of the memories is significantly altered to affect one’s dispositions [6]. 

Traumatic experiences are also pivotal in partially formulating self-defining memories that are of equal importance, for they are the underlying constituents of a person’s fundamental character and their sense of self. This is reinforced by the ideas of John Locke on memory with support from contemporary empirical evidence in spite of critical objections that claim no relationships between memory and personal identity [17]. While dissenting views ought to be acknowledged, the premise of Lockean ideas and any experimental support acts as a vital presumption in the current argument, which asserts that erasing one’s self-defining memories may change an individual’s narrative identity—the integration of one’s internalized, evolving life stories to render the person’s life with unity and meaning [18]. For the reason that narrative identities are malleable to change in sync with individuals’ memories, this implies that the reactivation of previously erased self-defining memories or implanting false memories may fail to be reintegrated with the self [6]. In such circumstances, individuals become susceptible to betraying or self-deceiving their original self as their life deviates from their truthful identity in the event of having their memories manipulated by optogenetics [6]. 

Analyzing the effects of memory modification on personal identity further requires a discussion on the threat posed toward individual authenticity. While the idea of authenticity has multiple conceptualizations, it is beneficial to consider authenticity from a dual-basis framework that combines accounts from existentialism (self-creation) and essentialism (self-discovery) in prompting critical ethical inquiries regarding the use of optogenetics [6]. Existentialists outline authenticity as having the ability to act upon one’s honest choices and identity without the influence of external social pressure and norms, while essentialists add in the concomitant aspect of being faithful to one’s true self—meaning that the individual has a clear and accurate depiction of their own life narratives in both the past and present that culminated in who they are to drive their purpose in life upon realization. The interference of optogenetics in modifying individuals’ memories suggests the alteration of one’s identity and certain affiliated values, beliefs, and other characteristics. Ultimately, doing so leads to the consequences as described above as one’s authenticity and intrinsic character becomes prone to diminishment and misrepresentation, respectively, thus leading the acts of self-creation and self-discovery into disarray [19, 20]. 

Note that the act of becoming inauthentic is generally deemed as morally permissible, however, under the circumstance that the choice of undergoing optogenetic intervention to modify one’s memory is made without ambivalence but rather it is derived from one’s higher-order desires that may lead to greater benefits relative to the potential harms, such as PTSD patients with severe symptoms in which conventional treatment methods are ineffective. These cases are important to be considered when formulating effective frameworks for regulating the use of optogenetics, yet questions such as to what extent is one’s external freedom compromised or is the essence of the individual resulted from optogenetic memory modification different than their original self are equally noteworthy for ethical examination. As a result, the dynamic and relational narrative construction of individuals’ identities (i.e., discovering oneself and acknowledging one’s identity) becomes subjugated to conformity in the sense that individual choices are no longer established on the basis of adhering to one’s true self; instead, they stem from the altering effects of optogenetic memory modification that violates the pillars of authenticity at the expense of favoring one’s local autonomy over authenticity. One familiar example is for a naturally shy individual to behave in an outgoing manner when interviewing for jobs that prefer extroverted attributes in its applicants [19, 20, 21]. 

The authenticity argument in relation to one’s identity nevertheless suffers from criticisms regarding the practical utility of the dual-basis framework in assessing memory modification and its implications given the individual-focused and idealistic framing of ideas. Despite everything, the dual-basis framework offers a well-balanced account of the complexity of neuroscience and psychology by presenting both the possibilities and constraints of creating one’s narrative identity [20]. Though interestingly, Kostick and Lázaro-Muñoz have argued that the brain has neural safeguards against inauthenticity caused by optogenetics that relies on neuroplasticity [22]. Of note that the discussion above only entails the worst-case scenarios of memory modification, however, to help guide future directions in the neuroethics of optogenetic applications since the degree of optogenetic effects on memory has yet to be demarcated. Therefore, it is worthwhile to be reliant upon the possible outcomes of hypotheticals to gauge reality, for it is currently difficult to translate optogenetic findings in animal models to humans in conjunction with the lack of a comprehensive neurobiological understanding of memory’s unpredictable nature.

As with any novel neurotechnology with an undefined impact, optogenetics imposes its own risks and benefits for the purpose of memory modification that requires a neuroethical evaluation of its ramifications in changing the properties and dimensions of memory. The arguments that have been presented herein is reminiscent of the events that unfolded in the 2004 romance and science fiction film Eternal Sunshine of the Spotless Mind, where the two protagonists both decided to undergo the procedure of having their memories of each other removed following a breakup, only to found remorse in the aftermath as they tried to reconcile their relationship despite the loss of their memories. Therefore, memory is what keeps the stories of our lives in a continuous state of progression as what oxygen is to fire; it is the gate that reveals our identities, values, ambitions, struggles, and relations to one another to empower us to live happily in a dreadful world in remembrance of who we are and those who we cherish.

References 

1. Josselyn, S. A. (2018). The past, present and future of light-gated ion channels and optogenetics. Elife, 7, e42367. 

2. Felsen, G., & Blumenthal-Barby, J. (2022). 7 Ethical Issues Raised by Recent Developments in Neuroscience: The Case of Optogenetics. Neuroscience and Philosophy. 

3. Alberts, B., Johnson, A., Lewis, J., Raff, M., Roberts, K., & Walter, P. (2002). Ion channels and the electrical properties of membranes. In Molecular Biology of the Cell. 4th edition. Garland Science. 

4. Fenno, L., Yizhar, O., & Deisseroth, K. (2011). The development and application of optogenetics. Annual review of neuroscience, 34, 389-412. 

5. Carter, M., & Shieh, J. C. (2015). Guide to research techniques in neuroscience. Academic Press. 

6. Adamczyk, A. K., & Zawadzki, P. (2020). The memory-modifying potential of optogenetics and the need for neuroethics. NanoEthics, 14(3), 207-225. 7. Canli, T. (2015). Neurogenethics: An emerging discipline at the intersection of ethics, neuroscience, and genomics. Applied & translational genomics, 5, 18-22. 8. Hamilton, G. F., & Rhodes, J. S. (2015). Exercise regulation of cognitive function and neuroplasticity in the healthy and diseased brain. Progress in molecular biology and translational science, 135, 381-406. 

9. Liu, X., Ramirez, S., & Tonegawa, S. (2014). Inception of a false memory by optogenetic manipulation of a hippocampal memory engram. Philosophical Transactions of the Royal Society B: Biological Sciences, 369(1633), 20130142. 

10. Guskjolen, A., Kenney, J. W., de la Parra, J., Yeung, B. R. A., Josselyn, S. A., & Frankland, P. W. (2018). Recovery of “lost” infant memories in mice. Current Biology, 28(14), 2283-2290. 

11. Rook, N., Tuff, J. M., Isparta, S., Masseck, O. A., Herlitze, S., Güntürkün, O., & Pusch, R. (2021). AAV1 is the optimal viral vector for optogenetic experiments in pigeons (Columba livia). Communications Biology, 4(1), 100. 

12. Chen, R., Gore, F., Nguyen, Q. A., Ramakrishnan, C., Patel, S., Kim, S. H., ... & Deisseroth, K. (2021). Deep brain optogenetics without intracranial surgery. Nature biotechnology, 39(2), 161-164. 

13. Lin, J. Y., Knutsen, P. M., Muller, A., Kleinfeld, D., & Tsien, R. Y. (2013). ReaChR: a red-shifted variant of channelrhodopsin enables deep transcranial optogenetic excitation. Nature neuroscience, 16(10), 1499-1508.

14. Andrei, A. R., Debes, S., Chelaru, M., Liu, X., Rodarte, E., Spudich, J. L., ... & Dragoi, V. (2021). Heterogeneous side effects of cortical inactivation in behaving animals. Elife, 10, e66400. 

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

16. Greenberg, D. M., Baron-Cohen, S., Rosenberg, N., Fonagy, P., & Rentfrow, P. J. (2018). Elevated empathy in adults following childhood trauma. PLoS one, 13(10), e0203886. 

17. Robillard, J. M., & Illes, J. (2016). Manipulating memories: The ethics of yesterday’s science fiction and today’s reality. AMA Journal of Ethics, 18(12), 1225-1231. 

18. McAdams, D. P., & McLean, K. C. (2013). Narrative identity. Current directions in psychological science, 22(3), 233-238. 

19. Tan, S. Z. K., & Lim, L. W. (2020). A practical approach to the ethical use of memory modulating technologies. BMC Medical Ethics, 21(1), 1-14. 20. Leuenberger, M. (2022). Memory modification and authenticity: a narrative approach. Neuroethics, 15(1), 10. 

21. Zawadzki, P. (2023). The Ethics of Memory Modification: Personal Narratives, Relational Selves and Autonomy. Neuroethics, 16(1), 6. 

22. Kostick, K. M., & Lázaro-Muñoz, G. (2021). Neural safeguards against global impacts of memory modification on identity: ethical and practical considerations. AJOB neuroscience, 12(1), 45-48.

TOXICITY: ETHICS OF THE BLACK PLUME AND CHEMICAL VIOLENCE ON COMMUNITIES

Recently, a large black cloud hovered over the small town of East Palestine, Ohio — chemicals released from a massive train wreck were burning en masse. At face value, a “mushroom cloud” of chemicals cannot be good. This accident garnered national intervention; it demonstrated how a toxic plume is a sign that a community has been subjected to chemical violence. The derailment has since become one of the United States’ highest-profile chemical disasters in recent years [1]. While the East Palestine, Ohio incident should be addressed in its severity, it should not overshadow the communities who have, time and time again, silently suffered from chemical violence as a result of industrial pollution. Rather, widespread public attention offers a chance for state and national leaders to have high-level conversations about such communities and take action. 

Industrial pollution is not a new phenomenon in the United States. Communities near power plants, factories, or any other industrial area are disproportionately exposed to air-born toxins, and resultantly have high rates of cancer. Yet, these toxins are just that — airborne. Without bringing in the necessary equipment and personnel, the toxins are hard to determine as harmful. And, without a telltale sign of the toxic plume, citizens have little basis to prove on their own that they are victims of chemical violence. 

Air quality has improved over the past few decades in the United States through the persistent struggle of community advocates to garner votes and translate community voices into action [2]. Nevertheless, recent years have seen an uptick in petrochemical factory locations, especially in Louisiana, one of the most affected states. The “Cancer Alley” – a nickname for the stretch of the Mississippi River between New Orleans and Baton Rouge – has a high concentration of such factories and cancer diagnoses. With little intervention from state governments on everyday toxicity, it is evident that industrial companies continue to have leverage over the health and well-being of ordinary citizens. 

When citizens’ biological illnesses go unrecognized, a new battle ensues — what can one do to obtain state assistance for an ailment that is out of their control? Chloe Ahmann, an Assistant Professor at Cornell University, describes the concept and practice of toxic disavowal as a way for such citizens to gain support. Toxic disavowal is the state where citizens who have been subject to chemical or biological harm choose not to be a toxic subject to the state, in order to receive state assistance. How and why would a person willingly become a toxic subject? When a community of people are affected by a chemical disaster, there are often not enough resources in that community to bring it back to health on its own. Think of events such as Hiroshima and Chernobyl, to industrial neighborhoods constantly harmed by pollution — the consequences as deadly as they are invisible. The people affected then have an opportunity to appeal as toxic subjects to their government in hopes of obtaining the benefits and care they need [3]. Ideally, the state recognizes the toxicity and takes action to prevent its harm. However, less visible chemical attacks are more likely to be swept aside, or even ignored. 

According to Ahmann, the citizens of Wagner’s Point, an industrial and former residential area in Baltimore, Maryland, had grimly suffered years of biological symptoms without government intervention. Images of their everyday suffering are poignant and shocking: snow would turn rainbow like “asphalt tinged with gasoline,” and year by year, chemical plants advanced until the communities seemed engulfed in toxicity [3]. The citizens, having no way to prove that the industrial chemicals were the cause of their suffering, decided to engage in toxic disavowal when a series of petrochemical explosions happened nearby. In other words, they chose not to become toxic subjects and instead pushed their government to take down the residential area because frequent factory explosions put them at risk of chemical violence [3].

The idea worked to an extent. Residential living did end up being cleared at Wagner’s Point, and citizens moved out [3]. Yet, if there had not been physical proof — dangerous explosions — of life being untenable at Wagner’s Point, then perhaps even this attempt would have left governments unconvinced. For chemical violence awareness to truly change the lives of those affected, stakeholders must recognize the slow and invisible impact of toxicity on a daily basis. 

The East Palestine train derailment reveals the resources that governments have at their disposal to test for chemical risk. Within four days of the accident, the U.S. Environmental Protection Agency discovered multiple hazardous chemicals released into the environment, including vinyl chloride, a colorless gas that can cause dizziness and headaches in the short-term, and liver cancer in the long term [1]. Bringing these same detection tools to smaller communities at risk can give the citizens there the transparency they need, or at least baseline recognition of their dangerous daily living conditions. Just recently, EPA chief  Michael Regan traveled to Louisiana to announce a proposal to sharply reduce toxic emissions in the state and around the country [4]. Taking in the train derailment as not just a tragedy, but an area of growth is a step in the right direction for public health and environmental regulators. 

It goes without saying that healthy air is a basic need of human life. Governments, agencies, and companies alike have an opportunity to reverse their complacency and truly prove that they can make lives of everyday people safer. Above all, we should not wait for the black plume. 

References

1. Fortin, J. (2023). Ohio train derailment: Separating fact from fiction. The New York Times. https://www.nytimes.com/2023/02/28/us/ohio-train-derailment-east-palestine.html.

2. Baurick, T., Younes L., & Meiners, J. (2019). “Welcome to ‘Cancer Alley,’ where toxic air is about to get worse.” ProPublica. October 30, 2019. https://www.propublica.org/article/welcome-to-cancer-alley-where-toxic-air-is-about-to-get-worse.

3. Ahman, C. “Toxic disavowal.” (2020). Somatosphere. http://somatosphere.net/2020/toxic-disavowal.html/.

4. McFadden, C., Reimchen, K., & Schapiro, R. “EPA Chief Goes to ‘Cancer Alley’ to Announce Proposal to Cut Toxic Air Emissions.” (2023). NBC News. https://www.nbcnews.com/news/nightly-films/epa-chief-regan-cancer-alley-louisiana-proposal-toxic-air-emissiions-rcna78381.

The Quest for Wealth and Fame: Corporate Greed Poses a Threat to Healthcare Equity

Stanford alum and disgraced CEO Elizabeth Holmes was the media darling of the biotechnology industry. With her company Theranos, Holmes made grandiose promises of revolutionizing the world of healthcare as we know it[8]. 

“The Edison,” as Holmes referred to it, was a machine that would forever change the way healthcare providers and physicians diagnosed their patients. With only a few drops of blood – in comparison to the 0.17-0.34 fluid ounces of blood needed for a traditional blood test – the Edison could run approximately a thousand medical tests on one patient, identifying biological markers  for high cholesterol, diabetes, cancer, and more[8]. 

For people who were reluctant to get important medical tests for fear of needles or a fear of getting their blood drawn, the Edison was their savior. For companies hungering to be associated with the next money-making venture, the Edison was a gold mine. 

Fast forward to this year and Theranos has been shut down, massive corporations, such as Walgreens, have withdrawn from their partnerships with Theranos, citing failures to meet contractual agreements on Theranos’s part, and Holmes has been convicted of defrauding her investors4. With the help of Theranos whistleblowers Tyler Shultz, Adam Rosendorff, and Erika Cheung, Wall Street Journal reporter John Carreyrou exposed many working deficiencies within the company, revealing the scandalous truth that the Edison was not a functional machine and that Holmes and her associates were utilizing external machines to run blood tests[3]. 

The downfall of Holmes’s empire is one of the many blatant examples of the increasing presence of power-hungry companies in healthcare. In a world where medical services are becoming more and more expensive and inaccessible, the last thing people need is this catastrophic, greedy battle between companies vying to create the next big vaccine or type of medicine, which even go as far as lying and defrauding their clients as a means to gain more profit. 

While Theranos has the most notoriety in terms of their violation of ethical standards and their disregard for their patients, their unethical decisions are not uncommon in the biomedical industry. In fact, the rising price of prescription drugs from pharmaceutical companies has continued to make medical services inaccessible to many populations. It was reported that in January 2022, there was nearly a $150 average increase per drug1. Across the board, pharmaceutical companies are increasing the price of prescription drugs to the point of exceeding the inflation rate. 

The COVID-19 pandemic, a devastating health crisis with wide-reaching effects, has forever tainted global history, with about 760,000,000 people contracting the disease and almost 7,000,000 people in the world dying from it9. Pfizer and Moderna, two of the giants in the pharmaceutical industry, were the first companies to announce COVID-19 vaccines. At the height of the pandemic, the US government purchased 200 million vaccine doses, paying a federal price of $19.50 per Pfizer dose and $15.25 per Moderna dose. Since then, the price for vaccine doses has risen, with the government now paying $30.48 per Pfizer dose and $26.36 per Moderna dose. However, what is even more shocking is that commercial prices for these vaccines are almost three to four times greater than federal prices. At an investor call, Pfizer claimed that they believed commercial prices for their vaccine to be between $110 and $130 per dose. Moderna also indicated that their commercial prices would be in the same range. While people with health insurance could get vaccinated at much lower rates, uninsured individuals would have to be confronted with high commercial prices[1]. 

In a chain reaction, rising healthcare prices lead to rising insurance costs and premiums[6]. This has enormous negative impacts on many people, ranging from employees having to pay higher healthcare costs as part of their company compensation, cutting into the pay they can take home, to forcing people to postpone much needed medical care and prescription drug refills due to unaffordable prices. Additionally, according to a survey conducted by the Kaiser Family and the Los Angeles Times, more than 27% of the respondents claimed they had problems paying medical bills, forcing them to resort to other methods to get enough money to pay, such as taking out loans or borrowing from friends and family1. Furthermore, in responding to Mercer’s National Survey of Employer-Surveyed Health Plans, many employers believe that medical cost plans will only continue to rise at an average rate of 5.6% in 2023[7]. 

In response to the prevalence of corporations setting exorbitantly high prices on healthcare services, the government has implemented certain measures to counteract these growing costs. The Biden-Harris Administration introduced the Inflation Reduction Act, which aims to lower the inflated costs of prescription drugs, making healthcare more affordable to all Americans2. One of the most prominent provisions of the Inflation Reduction Act involves forcing drug companies to pay rebates or refunds to Medicare if their prices rise faster than natural inflation[5]. 

Yet, there is still more to do. Despite helpful policy programs meant to advance healthcare equity, the inability to pay for basic medical care is still an epidemic that continues to be detrimental to so many people. People like Holmes and other corporations only further deteriorate the healthcare system in pursuit of their own selfish needs. In order to move forward, the U.S. government must place their citizens first and work towards legislation that can reform our healthcare system and promote equitable medical services and treatments for all.

Works Cited 

1. 2022. (2022, December 7). How Much Could COVID-19 Vaccines Cost the U.S. After Commercialization? KFF. 

https://www.kff.org/coronavirus-covid-19/issue-brief/how-much-could-covid-19-vaccines -cost-the-u-s-after-commercialization/ 

2. Affairs (ASPA), A. S. for P. (2022, September 30). New HHS Reports Illustrate Potential Positive Impact of Inflation Reduction Act on Prescription Drug Prices. HHS.gov. https://www.hhs.gov/about/news/2022/09/30/new-hhs-reports-illustrate-potential-positive -impact-inflation-reduction-act-prescription-drug-prices.html 

3. Allyn, B. (2022, January 5). Theranos whistleblower celebrated Elizabeth Holmes verdict by “popping champagne.” NPR.org. 

https://www.npr.org/2022/01/05/1070474663/theranos-whistleblower-tyler-shultz-elizabe th-holmes-verdict-champagne 

4. Carreyrou, J. (2015, October 15). Hot Startup Theranos Has Struggled With Its Blood-Test Technology. WSJ; Wall Street Journal. 

https://www.wsj.com/articles/theranos-has-struggled-with-blood-tests-1444881901 5. Cubanski, J., Neuman, T., & Freed, M. (2022, September 22). Explaining the Prescription Drug Provisions in the Inflation Reduction Act. KFF. 

https://www.kff.org/medicare/issue-brief/explaining-the-prescription-drug-provisions-in-t he-inflation-reduction-act/ 

6. Hughes, S., Gee, E., & Rapfogel, N. (2022, November 29). Health Insurance Costs Are Squeezing Workers and Employers. Center for American Progress. 

https://www.americanprogress.org/article/health-insurance-costs-are-squeezing-workers-a nd-employers/ 

7. Miller, S. (2022, August 16). Medical Plan Costs Expected to Rise 5.6% in 2023. SHRM. https://www.shrm.org/ResourcesAndTools/hr-topics/benefits/Pages/health-plan-costs-exp ected-to-rise-in-2023.aspx 

8. The Editors of Encyclopaedia Britannica. (2019). Elizabeth Holmes | Net Worth & Facts | Britannica. In Encyclopædia Britannica. 

https://www.britannica.com/biography/Elizabeth-Holmes 

9. WHO. (2022). WHO COVID-19 Dashboard. World Health Organisation. https://covid19.who.int

The Value of Social Support for Transplant Candidates

Organ transplantation saves lives but requires a wait, and the wait for a suitable organ often means waiting for another life to end. This complex waiting game captures 104,101 people in the United States who are currently in need of a life-saving organ transplant [1]. Organs are a scarce resource, so allocating them for transplant requires a highly regulated selection process. Beyond scarcity, the intensity of the surgical procedure, extensive recovery time, and efforts necessary to maintain a new organ post-transplant all contribute further to the complex listing process for organ transplant. Therefore, care teams must evaluate many medical and social factors to determine if transplantation is the appropriate care plan for each patient. 

A primary social consideration in the evaluation of one’s candidacy for transplantation is social support. In their article “Should Lack of Social Support Prevent Access to Organ Transplantation?” Berry et al. argue that limited social support should not serve as an exclusion criteria for transplant candidates [2]. They discuss the lack of evidence between social support criteria and transplant outcomes, and defend that social support requirements contribute to inequity and inconsistency in transplant care [2]. They argue that rather than requiring social support for transplant listing, a more ethical approach may include supporting the needs of the patients with a limited support system. Although their alternative proposal claiming that accommodating social support needs of those who lack it would be more ethically sound than excluding them from transplantation sounds nice, social support as a consideration remains essential. I will discuss why social support is part of the evaluation process for organ transplantation, how transplant medicine is unique from other medical specialties, then address the burdens associated with maintaining social support. I will conclude by considering future steps towards more ethical evaluations of social support.

1. Why Social Support?

We must consider why social support is a consideration in the first place. A recent survey approximates that about “10% of patients who pursue transplant evaluations are excluded due to inadequate social support” [2]. UNOS does not specify social support as a factor for organ matching, but it is a consideration across many major transplant centers for listing, including here at the University of Virginia Health System [3]. Other associations, such as CMS (the Centers for Medicare & Medicaid Services) and professional transplant societies, have established national guidelines requiring social support assessment to determine transplant suitability [4]. 

What does this social support criterion look like in practice? Consider the patient who lives alone, does not have a planned social support network, and comes to appointments alone or with inconsistent caregivers each time. This patient is more likely to mix up medication and be anxious about the logistics of many appointments (scheduling, traveling, etc). These are only a few of the many burdens that fall onto patients who receive an organ transplant. Now, consider the patient who has a strong social support system. Imagine they have 1-2 caregivers who are committed to their treatment and the success of their transplant. This caregiver has agreed to provide transportation, meet with clinicians to arrange scheduled medications weeks in advance, be available to provide around-the-clock care, and attend all appointments to ensure they have an accurate understanding of the severity of disease, the urgency of surgery, and the significance of recovery. The patient with social support is far more likely to be able to execute their treatment plan and experience a successful organ transplant.

At UVA Health, social workers see patients regularly throughout treatment to evaluate the level of commitment of their social support network. The initial visit for prospective transplant patients at UVA is comprehensive and includes an evaluation by a team of clinicians who assess each patient’s medical status and organ failure, financial resources, and psychosocial factors, including social support. When asked about the value of a social support criterion, the UVA transplant team responded with the following justification: absence of a strong social support network makes patients more vulnerable to the risks of transplant surgery and recovery, setting them up for an unsuccessful transplant experience. 

2.What Makes Transplant Unique

Berry et al. identify that in other medical scenarios patients are rarely evaluated based on social support as a criteria for receiving life-saving treatment [2]. Others draw parallels between pediatric social support and transplant care, claiming pediatric patients should not be withheld life-saving treatment because of insufficient parenting, so transplant patients should not be excluded because of suboptimal social support [5]. Yet, one must recognize that the life-saving treatment associated with organ donation is a unique facet of medicine. Specifically, organ transplantation differs from other treatments in the consideration of utility, as organs are low in supply but high in demand. Taking a risk on an organ recipient– whether it be medical or social– has far-reaching consequences. Not only does an unsuccessful transplant harm the patient whose body is rejecting a life-saving organ, but they harm the next patient on the long waitlist who is crucially ill and denied treatment. This next patient may have had a stronger chance of survival, but instead “two patients die: the one who was transplanted and the one who was not” [6].  Thus, we must take extra measures with organ listing to ensure that the limited supply is distributed in a way that maximizes survival of the organ and minimizes risk, which promotes overall patient survival. 

 3. The Burdens 

In meeting with social workers and attending organ listing selection meetings, it has become apparent to me that social support is a crucial consideration and a strong predictor for successful outcomes. Getting a transplant requires dozens of appointments before and after the procedure, for which patients need rides to and from. The number of medications transplant patients must take is often too much for a single person to handle, especially one who is recovering from a highly invasive surgical procedure. Therefore, adherence to post-transplant treatment and medication is largely emphasized to transplant patients and their caregivers. Social support is associated with adherence, as shown by a 50-year period meta-analysis that found adherence to be “1.74-times higher in patients from cohesive families, but 1.53-times lower in patients from families in conflict” [7]. 

Further, the emotional burden that comes with the process of organ transplant is high. Patients experience anxious anticipation, fear of death, and hesitancy about receiving an organ from another human’s body. Not to mention, the physical suffering living with end-stage organ failure along with the post-surgery recovery takes a toll on one’s mental health and quality of life. The 2004 meta-analysis studies found an association between post-transplant major depressive disorder and an absent caregiver support system [8]. Thus, the emotional component of social support is crucial– it is a catalyst to a strong recovery and gets patients out of bed, talking, eating, and living again [6]. While crucial, the emotional social support is also irreplaceable and requires “long hours, encouraging words, and true personal investment in the patient” [6]. 

As I have argued, social support is critical to a successful transplant especially considering the burdens of transplant treatment. Although there may be variation across systems and providers about what degree of social support is considered “adequate,” it should not be penalized and therefore go unconsidered for assessing transplant candidacy. Taking potentially burdensome measures at the front-end of one’s treatment, such as proving and providing social support, may help reduce greater and more life-threatening burdens later in the course of one’s treatment that arise due to a lack of adequate social support. The social support evaluation measures may feel burdensome but for good reason– they are crucial to the survival of the patient and the organ. 

4. Improvement Going Forward

Berry et al. discuss the variation in social support criteria across medical centers and individual clinicians, leading to an inconsistent evaluation of adequate social support, if evaluation takes place at all [2]. While social support evaluation can undoubtedly be subjective and inconsistent, it is still a valuable tool that should be considered for organ transplant candidacy. Instead of deemphasizing the importance of social support, we should shift our focus to minimize inconsistencies and subjective evaluations. To ensure assessments are backed by evidence and avoid subjective interference, transplant centers must rely on uniform, qualitative social support evaluation measures to predict outcomes. 

Additionally, transparency is paramount in providing organ transplant care. It is crucial that providers are transparent with their patients about why they are denied transplant and that they are clear about the purpose– to guarantee that patients have the resources and emotional support network to get them through the exhaustive treatment [6]. 

5. Conclusion

Organ transplant provides life-saving treatment of a scarce resource, so the allocation of organs is complex and requires careful consideration of many factors. Social support evaluation is an important and appropriate measure for transplant patients, as adequate social support helps prepare patients for unexpected risks, promote individual wellbeing and transplantation success, and accounts for the proper distribution on a population level of a limited supply of life-saving treatment resources.

References 

1. UNOS Data and Transplant Statistics | Organ Donation Data. (n.d.). UNOS. Retrieved March 21, 2023, from https://unos.org/data/

2. Berry, K. N., Daniels, N., & Ladin, K. (2019). Should Lack of Social Support Prevent Access to Organ Transplantation? The American Journal of Bioethics, 19(11), 13–24. https://doi.org/10.1080/15265161.2019.1665728

3. How we match organs. (n.d.). UNOS. Retrieved March 21, 2023, from https://unos.org/transplant/how-we-match-organs/

4. Ladin, K., Emerson, J., Butt, Z., Gordon, E. J., Hanto, D. W., Perloff, J., Daniels, N., & Lavelle, T. A. (2018). How important is social support in determining patients’ suitability for transplantation? Results from a National Survey of Transplant Clinicians. Journal of Medical Ethics, 44(10), 666–674. https://doi.org/10.1136/medethics-2017-104695

5. Sharma, A., & Johnson, L.-M. (2019). Should Poor Social Support Be an Exclusion Criterion in Bone Marrow Transplantation? The American Journal of Bioethics, 19(11), 39–41. https://doi.org/10.1080/15265161.2019.1665736

6. Wall, A. (2019). The Qualitative Value of Social Support for Liver Transplantation. The American Journal of Bioethics, 19(11), 25–26. https://doi.org/10.1080/15265161.2019.1665748

7. DiMatteo, M. R. (2004). Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 23(2), 207–218. https://doi.org/10.1037/0278-6133.23.2.207

8. Dew, M. A., DiMartini, A. F., DeVito Dabbs, A. J., Fox, K. R., Myaskovsky, L., Posluszny, D. M., Switzer, G. E., Zomak, R. A., Kormos, R. L., & Toyoda, Y. (2012). Onset and risk factors for anxiety and depression during the first 2 years after lung transplantation. General Hospital Psychiatry, 34(2), 127–138. https://doi.org/10.1016/j.genhosppsych.2011.11.009

Opinion: The Racial Disparities in Alzheimer’s Dementia Between Black People and White People Are a Call for Cultural Competency in Healthcare

   Many of us are unfortunately too familiar with Alzheimer’s disease, an irreversible brain disease caused by damage to the brain’s nerve cells which slowly destroys memory, language, and cognitive function [1]. Alzheimer’s dementia (AD) is a progressive process through which an individual goes from being forgetful to losing the ability to communicate or carry out the simplest daily task as a result of Alzheimer’s disease. This article focuses on the evidence through published medical literature that there are consistent and adverse disparities among black people compared to white people with respect to the incidence and prevalence of AD, the use of anti-dementia medications, and participation in clinical trials. These disparities negatively impact the quality of care black people with AD receive when compared to their white counterparts. This is a public health inequality and injustice that requires us to better coordinate a response to address and eliminate these disparities. 

   The most often cited estimate in the literature is that black people are twice as likely as white people to develop AD [1]. A 1999 study established that in the 65 and older population, black people are twice as likely as white people to have AD [2]. A 2017 study to analyze the incidence rate of AD in the 90 and older population similarly found that black people have the highest incidence rate with a 28% higher risk of AD than white people [3]. Consistent with the incidence rates, a meta-analysis of population-based studies revealed that black people had the highest prevalence, or proportion of people with AD. [4]. Given these studies, there is little room for debate that AD disproportionately impacts black people. 

  The causes of the increased incidence and prevalence of AD in black people have not been clearly established. The literature has identified medical and non-medical conditions which can contribute to the increased risk of AD in black people. For example, some studies proposed that vascular conditions, such as cardiovascular disease and diabetes, or obesity, may contribute to the increased risk as black people have a higher burden of these conditions [5]. Genetic risk factors for AD in black people have also been identified [6]. One large genetic study called the Alzheimer Disease Dementia Consortium revealed that the genes APOE-E4 and ABCA7 increased the risk of AD in black people, strengthening the idea that genetics may play a role in AD onset [7]. Interestingly, the findings so far suggest that both these genes are definitive risk factors for black people, whereas only APOE-E4 confers a similar degree of risk in white people [8].

  At the same time, there is growing evidence that socioeconomic factors are potential reasons for the increased risk. In a very recent study, Zuelsdorff et al. observed that stressful life experiences such as in education, finances, or legal system, were linked to poor late life cognitive function and that black people experienced over 60% more stressful life events than white people [9]. Also, another study by Kind et al. discovered that individuals living in disadvantaged neighborhoods which pose barriers to nutritious food, exercise, or toxin free environment, had disproportionately higher levels of an Alzheimer’s disease biomarker in their spinal fluid suggesting that socioeconomic factors may play a role in AD risk [10]. These studies should not at all be surprising as these social determinants of health are well known in the public health realm as sources of disease burden and negative outcome. 

  In light of the undisputable increased incidence of AD in black people, it is shocking to learn that black people are less likely to be prescribed or use certain anti-dementia medications on the market, such as Aricept and Namenda, which can reduce AD symptoms and increase function. One medical study investigated the use of anti-dementia medications between white people and minorities in a national community sample [11]. This study revealed that minorities, including black people, had a 30% lower use of such medications [11]. One researcher attributed the low medication usage to the underdiagnosis or delay in diagnosis of black people with AD as black people are more likely to delay seeking treatment because of physical, social, or economic barriers to healthcare [12]. 

  We are in a situation where simply increasing the prescription of anti-dementia medications in black people with AD is not a solution. One roadblock to this concept as a solution is that there is such low black participation in clinical trials that these trials cannot ensure that new drugs or treatments are safe or effective for black people because they are not adequately studied. Several studies have consistently found that black people are significantly underrepresented in most clinical trials for new drugs and therapies for AD [13, 14]. As low black participation in clinical research limits medical knowledge as to how AD may present in black people or the potential effect of treatment in black people, simply prescribing more drugs to an unstudied population does not promote racial equity.  

   The Alzheimer’s Association conducted a study which involved surveying adults and caregivers to assess their interest in clinical trials. It was found that black people were less interested in participating in clinical trials for AD than any other surveyed race [15]. The reasons more frequently cited by black people than white people against participation in clinical trials included a lack of trust in medical research and fear of unfair treatment [16]. This should hardly be surprising if we think back on the historical trend of unfair treatment of black people in the medical system, such as the infamous Tuskegee study where hundreds of black men with curable syphilis were deliberately left untreated resulting in their illness and death. The CDC later deemed this study “ethically unjustified”  [16], but the chilling effects of the study linger to this day as many black people still fear and are reluctant to participate in clinical research. 

   Furthermore, a recent study conducted by Raman et al. demonstrated that black people were more likely than white people to be excluded from AD trials due to not meeting cognitive inclusion criteria [14]. The cognitive inclusion criteria involved achieving certain scores on standardized cognitive tests, such as the Mini Mental Status Exam, and black people were disproportionately excluded based on their scores. This strongly suggests a racial bias in screening processes further exacerbating low black participation and preventing diversity in clinical research. For example, Brian Van Buren, a 69 year old black man, applied to five AD clinical trials when he was diagnosed with mild cognitive deficits and he was rejected from all five trials due to underlying health conditions that affect many black people [17]. Quita Highsmith, chief diversity officer of Genentech biotechnology company artfully captured the problem with racial bias or lack of diversity in clinical trials for AD:  “We are at a critical crossroad….Lots of data is being collected at clinical trials that will be used to develop treatments so it’s important to make sure the data reflects all populations affected….We don’t want communities left behind” [17].  

   The published research sheds light that racial discrimination continues to invade the realm of healthcare. One significant point is that many research studies discussed above are fairly recent which means that any efforts to eradicate healthcare disparities for black people have not yet been effective and further efforts are required. Based on the surveys conducted by the Alzheimer’s Association and the work of other researchers, the themes found to discourage black people from seeking medical care or participating in clinical research included experiences of unequal treatment and racism due to historical events and contemporary experiences as well as lack of cultural competency. As the surveys reveal that racial discrimination or insensitivity lies at the root of the problem, we need to shift our focus to establishing cultural competence in both the healthcare industry and clinical trials.

   Cultural competence is the ability to understand and respect the beliefs, values and histories of individuals of all cultural backgrounds [18]. For medical professionals, cultural competence has recently come to the forefront as an important component of providing the best care to patients. Dr. Luz Maria Garcini, assistant professor at Rice University whose research focuses on the health needs of marginalized communities, explained: “Cultural competence improves interpersonal interactions, helps to build trust, conveys respect, reduces biases that may lead to inaccurate diagnoses and treatments, and increases the chances that patients may be more compliant with the medical recommendations given” [18]. Most medical schools are now incorporating an element of cultural competence training as part of the medical school curriculum which means there is a hope for a future of medical professionals with a base understanding of cultural competence. 

   One may argue that one downside of cultural competence training is that it does not address the core societal injustices - socioeconomic conditions and racism - which predispose black people to a higher incidence of certain diseases in the first place, as discussed above. Cultural competence training for healthcare professionals may run the risk of improperly classifying racial disparities as a problem with healthcare professionals, instead of the broader societal problem that it is. This may be a valid observation, but if there is an opportunity to reduce racial disparities in healthcare, should we just throw in the towel because it does not fully eliminate racial disparities from society’s structure?  

   In an article published in the Journal of General Internal Medicine, Dr. Malat expressed another potential downside that cultural competence training, by focusing on cultural traits and beliefs, actually reinforces stereotypes about racial and ethnic minorities and suggests that racial groups are fixed and have homogenous cultures. This breeds the problem of generalizations about black people’s “culture,” all the while the dominant medical ideology is supposed to be objective and without culture [19]. The response to this is that cultural competence training serves merely as a guideline, and that healthcare providers still have the ability to inquire about each patient’s unique social beliefs and behaviors.     

   Cultural competence training may not be a standalone solution to the racial disparities that exist within our society. However, it presents an accessible method to address structural injustices in the healthcare layer and should not be abandoned merely because it does not fix the whole problem. There are present day obstacles to efficient cross-cultural communication in the healthcare setting. These can be best addressed by incorporating cultural competence elements, which include eliminating racial bias from research screening and engaging culturally diverse staff, language interpreters, and education on cultures to increase black participation in clinical trials, to seek physician contact, and to adhere to medication recommendations. Educating the medical community to understand other cultural points of view or historical experiences will work to establish trust and will result in black people receiving better quality of care with respect to AD and other medical conditions.

References

1.Alzheimer's Association. (2022). 2022 Alzheimer's Disease Facts and Figures.     Retrieved from https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf.

2. Gurland, B J., Wilder, D E, Lantigua, R., Stern, Y., Chen, J., Killeffer, E.F., & Mayeux, R. (1999). Rates of Dementia in Three Ethnoracial Groups. Int J Geriatr Psychiatry,14(6), 481-93. https://pubmed.ncbi.nlm.nih.gov/10398359.  

3. Whitmer, R., Gilsanz, P., Kawas, C.H., Mayeda, E.R. & Corrada, M.M. (2017). Racial/Ethnic Differences in Rates of Dementia Incidence Among the Oldest-Old. Alzheimer’s & Dementia 13(7S), 195-196. https://doi.org/10.1016/j.jalz.2017.07.053. 

4. Steenland, K., Goldstein, F.C., Levey, A., & Wharton, W. (2016). A Meta-Analysis of Alzheimer’s Disease Incidence and Prevalence Comparing African-Americans and Caucasians. J Alzheimer’s Dis 50(1), 71–76. doi: 10.3233/JAD-150778. 

5. Barnes, L.L, & Bennett, D.A. (2014). Alzheimer’s Disease in African Americans: Risk Factors and Challenges for the Future. Health Aff (Millwood) 33(4), 580-586. doi: 10.1377/hlthaff.2013.1353. 

6. Kunkle, B.W., Schmidt, M., Klein, H.U., Naj, A.C., Hamilton-Nelson, K.L., Larson, E.B., & Evans, D.A.,… Kukull, W.A. (2021). Novel Alzheimer Disease Risk Loci and Pathways in African American Individuals Using the African Genome Resources Panel. JAMA Neurol. 78(1), 102-103. doi:10.1001/jamaneurol.2020.3536

7. Nussbaum, R.L. (2013). Genome-Wide Association Studies, Alzheimer Disease, and Understudied Populations. JAMA 309(14), 1527-8. doi: 10.1001/jama.2013.3507. 

8. Jaslow, R. (April 10, 2013). Alzheimer’s gene ABCA7 Linked to Increased Disease Risk in African-Americans. CBS News. https://www.cbsnews.com/news/alzheimers-gene-abca7-linked-to-increased-disease-risk-in-african-americans/

9. Zuelsdorff, M., Sonnega, A., Byrd, D.R., Benton, S.F., & Turner, R. (2020). Lifetime Stressful Experiences and Cognitive Performances in African American and White Older Adults: New Evidence from a Population-Based Cohort. Alzheimer’s & Dementia 16(S10). doi.org/10.1002/alz.046422. 

10. Kind, A., Bendlin, B., Kim, A., Koscik, R., Buckingham, W., Gleason, C., Blennow, K., Zetterberg, H., Carlsson, C., & Johnson, S.C. (2017). Neighborhood Socioeconomic Contextual Disadvantage, Baseline Cognition and Alzheimer’s Disease Biomarkers in the Wisconsin Registry for Alzheimer’s Prevention (WRAP) Study. Alzheimer’s & Dementia 13(7S), 195-196. doi.org/10.1016/j.jalz.2017.07.054. 

11. Zuckerman, I., Ryder, P., Simoni-Wastila, L., Shaffer, T., Sato, M., Zhao, L. & Stuart, B. (2008). Racial and Ethnic Disparities in the Treatment of Dementia Among Medicare Beneficiaries. The Journals of Gerontology, 63(5), 328-333. https://doi.org/10.1093/geronb/63.5.S328

12. Gianattasio, K.Z., Prather, C., Glymour, M.M., Ciarlegio, A. & Power, M.C. (2019). Racial Disparities and Temporal Trends in Dementia Misdiagnosis Risk in the United States.” Alzheimers Dement 5, 891-898. doi: 10.1016/j.trci.2019.11.008. 

13. Denny, A., Streitz, M., Stock, K., Balls-Berry, J, Barnes, L.L., Byrd, G.S., Croff, R…& Lingler, J.H. (2020). “Perspective on the ‘African American Participation in Alzheimer Disease Research: Effective Strategies’ Workshop, 2018.” Alzheimer’s & Dementia 16(12), 1734-1744. https://doi.org/10.1002/alz.12160. 

14. Raman, R., Quiroz, Y.T., Langford, O., Choi, J., Ritchie, M., Baumgartner, M., Rentz, D… & Grill, J.D. (2021). Disparities by Race and Ethnicity Among Adults Recruited for a Preclinical Alzheimer’s Disease Trial. JAMA Netw Open 4(7). doi: 10.1001/ jamanetworkopen.2021.14364. 

15. Alzheimer’s Association. (2021). Special Report. Race, Ethnicity and Alzheimer’s in America. Retrieved https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report-2021.pdf.

16. Centers for Disease Control and Prevention. (n.d.) Tuskegee Timeline. https://www.cdc.gov/tuskegee/timeline.htm

17. Ansberry, C. (August 31, 2020). An Alzheimer’s Quest: Enrolling More Black People in Clinical Trials. Wall Street Journal. 

https://www.wsj.com/articles/an-alzheimers-quest-enrolling-more-black-people-in-clinical-trials-11598891561?st=87ao3m3knzqfg8n

18. Pelc, C. (November 9, 2022). What is Cultural Competency, and Why is it Crucial to Healthcare? Medical News Today. https://www.medicalnewstoday.com/articles/what-is-cultural-competency-and-why-is-it-crucial-to-healthcare#What-is-cultural-competency?

19. Malat, J. (2013), The Appeal and Problems of a Cultural Competence Approach to Reducing Racial Disparities. J. Gen. Intern. Med. 28(5), 605-607. doi:  10.1007/s11606-013-2363-y.

Towards an HIV Cure: Benefits and Risks of a CRISPR Intervention

The HIV/AIDS epidemic started with its first case in 1981 and has caused irreparable, ongoing damage to communities around the world. Scientists around the globe have quickly moved to develop treatments and cures for those who contract HIV/AIDS. In many parts of the world, people have access to treatment that will stop a decline in quality of life for those living with the disease. These treatments are called antiretroviral therapies and work to reduce the HIV viral load in a patient who is taking the drug [1]. Decreasing the viral load allows the body to recover and fight off HIV infection and related illnesses and certain HIV-related cancers. These drugs often reduce the possibility of transmission of HIV as well. Overall, these therapies provide those living with HIV a chance at maintaining a high quality of life and increased life expectancy compared to those who are not being treated with HIV [2].

However, these treatments are not available everywhere. Antiretroviral therapies and pre-exposure prophylaxis (PrEP) are widely available in the United States for those who can afford them. Pre-exposure prophylaxis is a medication that is highly effective at reducing the chances of contracting HIV from sexual contact or drug use [3]. It is commonly prescribed for those at risk of contracting HIV. The gap between those who can access these treatments and those who cannot has a substantial impact on the prevalence of the disease. In South Africa, one country where the AIDS crisis is most severe, the HIV/AIDS epidemic is far from over. There, more than 18 percent of the adult population is infected with HIV/AIDS, whereas in the United States, the prevalence rate is below 1 percent [4]. These numbers are staggering. 

They illustrate that the United States is faring quite well with regard to the HIV/AIDS epidemic, while other countries are continuing to struggle. In South Africa, the rate of new infections has lowered over the past ten years, but the number of people living with HIV/AIDS is increasing faster than the rate at which access to treatment can match [4]. Additionally, antiretroviral therapies require that you take them every single day. This has a possibility of being logistically challenging when medication starts to dwindle among a population. If you stop taking the antiretroviral therapy, the virus will begin to remultiply and you will become transmissible again [5]. It may be easy to take medication once a day if you have access to a stable source of medication, but this is not everyone’s reality. Luckily, cures have been undergoing development for some time.

One treatment that is showing promise is being developed using a cutting edge gene editing tool CRISPR. CRISPR may be able to act as a functional cure for HIV by inactivating integrated HIV DNA [6]. While CRISPR is a promising genetic tool, it is still in its early stages of being researched and applied. It requires further research and development in order to be both safe and effective. However, if safe and effective, it would allow for people who contract HIV to be able to take this treatment and be cured of HIV in a way that antiretroviral therapies would not be able to match. Tackling the HIV/AIDS epidemic would be much more logistically plausible and would not require broad, long-term medication regimes that could be hard, or, for some, impossible to follow [7]. 

The development of an HIV cure using CRISPR, however, is complicated and there are current limitations on the use of CRISPR as a way to neutralize or eradicate HIV in a host. One limitation is the delivery of the CRISPR/Cas apparatus when in vivo [8]. In some tests on mice and nonhuman primates, there has been successful obliteration of the HIV virus. However, precise targeting remains a significant challenge for effective administration of a CRISPR HIV cure. Clinical trials involving cell and gene therapy (CGT) have left people who participated in the trials with Leukemia, other illnesses, and even organ failure, which ultimately led to death [9]. These examples illustrate the very dangerous nature of using CRISPR to treat illnesses without extensive testing. And, even with further testing and development, it may be extremely difficult to predict the effect CRISPR and CGT will have on people. However, if the kinks are worked out, using CRISPR and other CGTs can have an enormous impact on not only HIV treatment, but also HIV prevention [8]. 

Every year, hundreds of thousands of people succumb to HIV/AIDS, with roughly two thousand people dying from the illness every day [9]. A cure is desperately needed. If we press forward with clinical trials using CRISPR or other forms of gene therapy, the risk associated with them may be too great. However, there is only so much that global access to antiretroviral therapies and PrEP can do for those who are living with – or are at higher risk of contracting – HIV. These are questions facing bioethicists and clinicians around the world and, frankly, an HIV cure could not come any sooner.

Work Cited:

1. U.S. Department of Health and Human Services. (2021). HIV treatment: The basics. National Institutes of Health. Retrieved April 7, 2023, from https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-treatment-basics. 

2. Centers for Disease Control and Prevention. (2022). Treatment. HIV. Retrieved April 23, 2023, from https://www.cdc.gov/hiv/basics/livingwithhiv/treatment.html 

3. Centers for Disease Control and Prevention. (2022). About PrEP. HIV. Retrieved April 23, 2023, from https://www.cdc.gov/hiv/basics/prep/about-prep.html. 

4. South Africa. UNAIDS. (2022, December 4). Retrieved April 8, 2023, from https://www.unaids.org/en/regionscountries/countries/southafrica. 

5. Wilberg, M. (2020, October 1). My HIV is undetectable, can I stop my medication? NAMaidsmap. Retrieved April 23, 2023, from https://www.aidsmap.com/about-hiv/faq/my-hiv-undetectable-can-i-stop-my-medication. 

6. Hussein, M., Molina, M. A., Berkhout, B., & Herrera-Carrillo, E. (2023). A CRISPR-Cas Cure for HIV/AIDS. International Journal of Molecular Sciences, 24(2), 1563. https://doi.org/10.3390/ijms24021563. 

7. Dybul, M., Attoye, T., Baptiste, S., Cherutich, P., Dabis, F., Deeks, S. G., Dieffenbach, C., Doehle, B., Goodenow, M. M.. Jiang, A., Kemps, D., Lewin, S. R., Lumpkin, M. M., Mathae, L., McCune, J. M., Ndung’u, T., Nsubuga, M., Peay, H. L., Pottage, J., … Sikazwe, I. (2020). The case for an HIV cure and how to get there. Lancet HIV, 8: e51-58. https://doi.org/10.1016/ S2352-3018(20)30232-0.

8. Bhowmik, R., Chaubey, B. (2022). CRISPR/Cas9: a tool to eradicate HIV-1.. AIDS Res Ther 19, 58 . https://doi.org/10.1186/s12981-022-00483-y. 

9. World Health Organization. (n.d.). HIV, number of people dying from HIV-related causes. World Health Organization. Retrieved April 8, 2023, from https://www.who.int/data/gho/data/indicators/indicator-details/GHO/number-of-deaths-due-to-hiv-aids. 

The Impact of Universal Basic Income Programs

In the months leading up to the 2020 presidential election, Democratic candidate Andrew Yang based his platform around one central idea: if elected, he would entitle every American adult to a “Freedom Dividend” [1]. His plan was to deposit 1,000 dollars into the bank account of US citizens every month, tax free, no strings attached. This is an example of a Universal Basic Income (UBI) program. Evidently this program was not enough to get Yang elected, but it did raise some questions about UBI and how it works. With the increased attention comes controversy and ethical debates: most importantly, are these programs worth the cost? 

Stanford University’s Basic Income lab defines UBI as “a regular cash payment to all members of a community, without a work requirement or other conditions” [2]. The basic belief behind the idea is that wealth generated by a community should be redistributed equally to its members in order to maximize all members’ standard of living. Having a basic income would also provide a safety net in case a person is suddenly unable to work due to illness, workplace injury, or childcare responsibilities. UBI programs can trace their ancestry back to colonial times, where in 1797 Founding Father Thomas Paine proposed a lump sum of cash bestowed to every person upon reaching adulthood [2]. The idea resurfaced during the early 1900s, when feminists of the Wages for Housework movement brought about the idea of “a wage separate from labor” to provide housewives independence from the male breadwinner. It arose again during the Civil Rights Movement of the 1960s when Martin Luther King proposed guaranteed income as part of the solution for the problem of systemic discrimination [2]. Many countries have tried implementing UBI experiments across a multitude of different communities, minority groups, and social classes, with varying levels of success. This article will examine two cases, one considered a success and the other hotly debated: Alaska’s Permanent Fund and Finland’s UBI Pilot.

Living in poverty can have extreme effects on health. Adults living in poverty are at higher risk for negative health effects like obesity, smoking, substance use, and chronic stress. They also generally have a shorter life span than those with means, with a 15 year difference in the life expectancy of the top 1% and the bottom 1% [3]. According to the Spotlight on Poverty project, Alaska has the lowest extreme poverty rate of any state: 4% compared to the national average of 8% [4]. This can be partly attributed to the state’s Permanent Fund. Funded by oil revenues from the vast natural resources enjoyed by the state, the Permanent Fund was founded in 1976 and pays each Alaska resident 1,600 dollars annually, regardless of employment, economic status, or other conditions. A study by the University of Alaska found that the program has significantly reduced poverty among Alaskans, resulting in improved health outcomes like higher birthweight and reduced childhood obesity [5]. Some critics of UBI programs worry that the extra cash will have a negative effect on employment. However, the same study found that the Fund had no effect on full time employment, and even correlated with an increase in part time work [5]. The Alaska Permanent Fund is viewed by many economists, politicians, and other leaders as a model of what a UBI program can be; an improvement in the lives of everyone in a community resulting in less poverty and better health outcomes. However, some other programs have not found the same success, as is evident with Finland’s UBI Pilot program.

From 2017 to 2019, 2,000 unemployed, randomly selected Finnish people were chosen to receive a monthly payment of 560 Euros (~$600). The goal of the program was to see if the extra cash would help unemployed people secure jobs faster. Ultimately, the pilot program did not shore up to this goal. A Business Insider report found that participants in the study were not more likely to be employed by the end of the trial period than a control group [6]. However, the participants were overall happier and healthier than the control group. Finns who received UBI rated themselves 7.3 out of 10 in life satisfaction compared to 6.8 from the control group, and were 13% more likely to report themselves as “in good physical health” [7]. The report also mentioned flaws in the study design, such as how the participants were forced to give up other government subsidies like housing and food assistance in order to receive the money. The “major flop” of the program, as described by the report, is cited by opponents of UBI as an example of why it is not feasible to implement. On the other hand, proponents of the program would argue that the potential benefits of improved happiness and life satisfaction are worth the cost. A different study design may have had better outcomes, but it is not possible to know the true potential of a UBI program without more data and experimentation.

The cases mentioned above are just two examples of how a potential UBI program could turn out. Alaskans benefit from low extreme poverty rates and improved health outcomes due to their Permanent Fund. While the Finnish pilot program did not improve unemployment, and thus missed the goal of its inception, it did improve the well being of the participants. Both programs have this in common: those who participate have a generally, if marginally, improvement of lifestyle quality. Local leaders are taking notice. 29 US states are currently testing UBI programs, and more are under development [8]. The successes or failures of these programs could change the way government aid is administered in the US. If the improvements of the health and wellbeing of the participants outweigh the economic costs, leaders and citizens may choose to redistribute the collective wealth of a community in order to increase the standard of living for all.

Work Cited:

1. Andrew Yang, “The Freedom Dividend”, Yang, 2020.

https://2020.yang2020.com/policies/the-freedom-dividend/#:~:text=Andrew%20would%20implement%20the%20Freedom,status%20or%20any%20other%20factor

2. The Stanford Basic Income Lab, “What Is Ubi: Stanford Basic Income Lab”, 2019.

https://basicincome.stanford.edu/about/what-is-ubi/

3. Raj Chetty, “The Association Between Income and Life Expectancy in the United States”, JAMA Network, April 26, 2016.

https://jamanetwork.com/journals/jama/article-abstract/2513561

4. Spotlight on Poverty, “Spotlight on the States”, 2023.

https://spotlightonpoverty.org/states

5. Michelle Saport, “New ISER Report: What Is the PFD's Effect on Socio-Economic Well-Being?”, University of Alaska Anchorage, June 28, 2019.

https://www.uaa.alaska.edu/news/archive/2019/06/iser-research-pfd-effect-socio-economic-well-being.cshtml#:~:text=The%20PFD%20has%20resulted%20in,increased%20in%20size%20over%20time

6. Aria Bendix, “One of the World's Largest Basic-Income Trials, a 2-Year Program in Finland, Was a Major Flop. but Experts Say the Test Was Flawed”, Business Insider, December 8, 2019.

https://www.businessinsider.com/finland-basic-income-experiment-reasons-for-failure-2019-12

7. Tera Allas, “An experiment to inform universal basic income”, McKinsey and Co, September 15, 2020.

https://www.mckinsey.com/industries/public-and-social-sector/our-insights/an-experiment-to-inform-universal-basic-income

8. Sergio Padilla, “Cities, States Experiment with Guaranteed Income Programs”, Pensions and Investments, October 28, 2022.

https://www.pionline.com/investing/cities-states-experiment-guaranteed-income-programs

On The Psychological Disembodiment Of Autonomy And Agency In Patients With Brain-Computer Interface Implants

   The radical symbiosis of the human body or mind with machines via technological interventions is one area of cutting-edge research in neural engineering that is reminiscent of many speculative science fiction stories on robotics [1]. “You just can’t differentiate between a robot and the very best of humans,” as the writer and biochemist Isaac Asimov once warned. This rendezvous is another typical instance in which the introduction of artificial intelligence (AI) has rendered the capability to revolutionize the many facets of human life, notably our physical and mental health. For that reason, the invisibility of the failing condition of the human brain necessitates the restoration of welfare to those who suffer from the severity of neuropsychiatric or neuromuscular disorders which are constrictive to human flourishing. 

   One prospective solution that is representative of the work of for-profit neurotechnology companies such as Kernel, Neuralink, and Synchron is the development of brain-computer interface (BCI) technology. BCIs are electronic feedback systems that record and analyze the brain activity of the user in real- or near-time using AI algorithms, thereby enabling the user to control an external device (computer cursors, prosthetic limbs, automated wheelchairs, etc.) with their mental faculties [2]. The purpose of BCI is to render neurologically compromised individuals (i.e., noncommunicative, paralyzed, etc.) with some extent of control over their social environment by enabling them to control any given external machine to compensate for their loss of certain cortical functions (e.g., speech, motor control). In application, BCI can be utilized to treat conditions such as cerebral palsy, spinal cord injury, locked-in syndrome, and amyotrophic lateral sclerosis [3]. Through utilizing machine learning techniques, BCIs can also become automatized, thereby possessing the capability to predict the likelihood of impending seizures in individuals with epilepsy, for example, by means of espying precursory neuronal events and subsequently advising the individual to take cautionary measures through sensory cues [4]. 

   Three distinct categories of BCI technology in terms of the amount of volitional control that is needed to generate signals are known: active, reactive, and passive [5]. Active BCIs demand the user to strategically produce specific neuronal patterns such as mentally picturing the movement of certain body parts. Reactive BCIs facilitate by having the user voluntarily attend to an external stimulus among various stimuli to evoke changes in brain activity. Finally, passive BCIs are reliant on the involuntary brain activities of the individual such as mental workload or affective states.

   In practice, BCIs (i.e., microelectrodes) are planted on the surface or on the inside of the neural cortex by means of invasive surgeries to establish the intimate connection between the brain and an external machine that will translate a mental process into an executable output [2]. One example of such an invasive BCIs is deep brain stimulation (DBS), which employs a two-directional (closed-loop) system as opposed to the one-directional algorithm of other common BCIs [6]. DBS is effective in the treatment of movement disorders such as Parkinson’s disease, obsessive-compulsive disorder, and dystonia. DBS requires the implantation of electrodes into certain areas of the brain, which can generate electrical impulses that can subdue abnormal brain activities in targeted brain regions (i.e., the subthalamic nucleus or the globus pallidus internus) and regulate chemical imbalances that are characteristic of specific circuitopathies [7]. The amount of electrical stimulation needed is sent through an extension wire that is connected to an internal pulse generator implanted under the skin in the upper chest. Noninvasive BCI methods allow for the recording of brain activity from the scalp using neuroimaging instruments (e.g., EEG, fMRI, NIRS), thereby eliminating the need for functional neurosurgery [8]. Interestingly, the work of Rakhmatulin and Volkl has demonstrated that a simple and noninvasive BCI device could be inexpensively made using a Raspberry Pi to interpret EEG patterns and allow the user to control mechanical objects—unlike other forms of BCI which pose the challenges of affordability and equity due to the extravagance of this technology [9]. 

   While the current development of many examples of BCI is still in a state of infancy and undergoing clinical trials, further applications of BCI can be extrapolated to commercial purposes such as entertainment, especially in the industry of video games [2], and even as far as augmenting one’s natural intelligence or military combat abilities for cognitive or physical enhancements, respectively, and allowing for brain-to-brain communication among users [10,11]. Only the clinical applications of invasive BCIs (assume all mentions of BCIs hereafter is invasive, unless stated otherwise) will be subjected to discussion and scrutiny herein, however, for the development of BCI technology and its application to medicine and healthcare is an ethically questionable undertaking in spite of its novelty and benefits. One specific peculiarity in our discussion poses the following ethical challenge: In patients with BCI implants, the degree of autonomy and agency can potentially be altered [12,13]. Subsequently, this could impact the accountability, privacy, and identity of patients on a psychological, social, and legal level [10]—along with other iatrogenic complications (i.e., acute trauma, glial scarring) from BCI-induced effects that could raise concerns for safety and ultimately transmute the hope of yesterday into the despair of tomorrow [2].

   It is of foremost importance to discern autonomy from agency as both terms assume that any individual in question is a free agent in a world where one has conscious control over their thoughts and actions. Whereas the concept of autonomy refers to the ability to independently choose a course of actions using one’s reason and knowledge in the absence of any imposed interferences or limitations [10], agency refers to the ability to influence a course of actions as desired and having the feeling of ownership of those actions [13]. These are merely general definitions, however, for various philosophers of different schools of thought are not in equal agreement on the correctness of such ambiguous concepts. 

  Neurologically compromised patients with BCI implants may ultimately experience a diminished sense of autonomy and agency such that they are no longer free agents of the world. Rather, they would simply be subjects to the laws of determinism in the same fashion that the biological brain and the physical universe are constructed, as evidenced through the first-person narratives of patients with BCI implants which will be discussed later. As a result, this concern raises several moral and philosophical questions in relation to one’s humanity and personhood: To what extent does an individual with a BCI implant feel “artificial”? What fraction of the thoughts and decisions that the individual produces are reflective of their authentic self? How much of the individual’s sense of self and judgment are fused with the technology in any given context [1]? In the same vein, Li and Zhang have previously demonstrated the cyborgization of live Madagascar hissing cockroaches that can be remotely controlled with the human brain. Using a portable SSVEP (steady-state visual evoked potential)-based BCI paradigm that delivers electrical stimulations to the cyborg cockroaches (the receiver), the cockroaches can be motioned to move in various directions in accordance with the intentions of the human subject (the controller) who is wearing an EEG headset [14]. While the use of cockroaches may be ethically justifiable to some extent, the story would be different if humans were placed on the receiving end. The line that distinguishes BCI as an assistive tool from the user’s body schema and self-understanding is thus blurred in the hybridization of mankind with AI in the forthcoming mechanistic evolution of Homo sapiens to Homo sapiens technologicus [2]. 

  The biggest antithesis to the argument regarding the preservation of one’s autonomy and agency is perhaps that the issues of humanity and personhood are irrelevant to the ethical debate on BCI. After all, the changes to identity experienced by patients with untreated neurological conditions are, arguably, far greater than the changes brought on by BCI. Therefore, the moral concerns of BCI in the problem of identity change, as some BCI researchers have argued, should not hold too much weight in the ethical guidelines for BCI as changes in self-perception among BCI users are only natural in the implementation of such neurotechnology [15]. As a matter of fact, a fraction of researchers has also made the assertion that the lack of independence to make decisions on the basis of one’s desires is not the fault of BCIs but rather, it should be ascribed to the pathologic condition of the individual that is hindering their will to express themselves or act [2]. If anything, BCIs are tools of empowerment, and studies on patients’ attitudes toward BCI have shown evidence of optimism [16]. 

   Nevertheless, the sense of autonomy and agency experienced by some BCI users are possibly illusionary and are prone to attribution errors [2]. The interplay between human and machine decision-making are becoming increasingly complex and intimate, such that BCIs can initiate certain outputs without the user’s volitional input [17]. This is technologically feasible, given that BCI systems contain a “black box” of outsourced information from the patient to which they have no access [12]. Current BCI systems offer only a restricted level of guidance control to influence executed movements and the ability to veto any initiated commands through specific output channels is also very much lacking [17]. Theoretically, BCIs, especially passive ones, can algorithmically learn the neural activity patterns of the user in specific situations, thus utilizing the collected and stored information to render selectively fewer options for the user to act upon, even in cases where the user may not necessarily endorse these alterations. Such algorithm-derived options, therefore, may attenuate the user’s freedom to produce autonomous commands and their capacity to make choices [12]. This problem is notably pronounced in DBS, where patients’ ability to think and make decisions is only prompted when electrical currents are conducted to alter the brain activity of the patients, which suggests it is a direct means of manipulation [1]. The effects of BCI on the autonomy and agency of patients will be further examined through a first-person perspective. 

   Gilbert et al. conducted a series of individual interviews on six epileptic patients who volunteered to undergo BCI implantation [18]. The objective of the interviews was to capture the contrast between pre- and post-operative experiences of these patients with respect to the perception of their self-image and self-change as a result of BCI-mediated events. The patients’ responses were rather ambiguous, however. One patient asserted that the incorporation of BCI changed her life favorably, such that it “changed [her] confidence [and her] abilities,” further elaborating that “with this device [she] found [herself]” [18]. Clearly, this particular patient experienced a sense of control and empowerment over her life with the BCI implant, yet her experience is in opposition to a different patient, who claimed that the BCI merely caused her otherness to be more apparent in the eyes of society and how it “made [her] feel [she] had no control [… she] got really depressed” [18]. The inability to have control over BCI-driven events suggests an issue regarding accountability. Noisy signals as a result of subconscious neural activity are known to feed into the output system of BCIs, thereby creating unintended movements that are not indicative of the user’s true desires [13]. Because unintended movements can lead to unpredictable and harmful consequences in specific contexts, accountability could possibly be misattributed to the BCI user, and feelings of having zero control in those circumstances may elicit the same miserable sentiment that the latter patient had expressed. The risks of device failure, hacker intrusion, and akrasia are also among the diverse factors that could potentially cause unintended acts to be performed by BCIs which may distort the user’s sense of self and identity in conjunction with the user’s moral and legal responsibilities [10]. 

   It is worth noting that when the aforementioned patient whose life was favorably impacted as a result of the BCI implant was ultimately subjected to having her BCI removed because the company that administered her the implant had to declare bankruptcy, her world fell apart. In the mind of that particular patient, it was as if a piece of her own flesh was being torn apart from her body. Gilbert later remarked that “the company [now] owned the existence of this new person” [1]. Notice, however, that one key element that contributed to the difference in the lived experience of patients with BCI implants is whether or not they view their disability as a part of who they are. Patients who accepted their epilepsy as a part of themselves were more likely to regard the BCI implants in a more positive or neutral manner than patients who did not view themselves as an epileptic, who instead experienced more distress and estrangement [14]. Although this observation cannot be generalized to the entire population of disabled individuals since the study only contained a sample size of six individuals, it does raise the question of whether BCI is a form of treatment or enhancement for disabled individuals. Depending on how disabled individuals see themselves, using BCI without identifying oneself as disabled may be interpreted as an enhancement, for example [2]. Alternatively, individuals who do identify themselves as disabled may perceive BCI as a treatment, but such individuals are most likely fearful of being subjugated to normality and thus refuse to undergo BCI implantation as a result of their attachment to their disability identity, which runs perpendicular to the original purpose of BCI in restoring normal capabilities to individuals who are neurologically compromised. 

The curious case of the patient who experienced a loss of control thus serves as the basis as to why BCI technology may not fully pass the ethical test. Notably, an emphasis on the psychological aftermath of BCI-induced effects with respect to the disembodiment of one’s sense of autonomy and agency should be taken into account. Let us consider the following hypothetical case scenario [19] that highlights our ethical intrigue: A 35-year-old man named Frank is an alcoholic who is at risk of alcohol use disorder and other health complications such as cardiovascular disease and liver cancer as a result of his excessive alcohol consumption. Due to his inability to fight off the withdrawal symptoms, his family suggested he seek DBS treatment to alleviate his compulsive drinking behaviors. Days after his surgery, Frank became indifferent to alcohol and was able to control his intake. However, Frank’s loss of interest in alcohol eventually caused him to experience remorse for undergoing the DBS treatment and he could no longer feel a connection to his old self, as though the treatment changed something about him that was more than his alcoholism. Nevertheless, Frank is hesitant about expressing his inner feelings to his family, who are likely to stigmatize him for his drinking behavior if Frank were to have the DBS device removed. 

  In the above scenario, the existential crisis that Frank is experiencing after his DBS treatment involves a paradox: the desire to be able to enjoy drinking alcohol and the desire to be rid of his alcohol addiction. Even more so, Frank also felt a sense of threat to his identity as a result of having the DBS device implanted in him, as though his decisions are entirely attributed to the device, thus depriving him of his right to autonomy and agency—a testament to the fact that these risks are commonly ill-conceived when giving meaningful consent and should be prioritized as much as protecting one’s privacy from being obtained through BCI systems [6]. One social factor, moreover, that is compromising Frank’s ability to decide and act in accordance with his own wishes is the societal stigma that is imposed upon him by his family, whose biased point of view is in alignment with the norm and is on the contrary to that of Frank’s [2]. The disembodiment of Frank’s identity and the closely affiliated psychological aspects of autonomy and agency are thus the focal points of this ethical debate in relation to the unprecedented effects of BCI on an individual’s humanity and personhood. 

   With utmost certainty, BCIs are among the list of technological singularities that will eventually bring about profound changes to the way clinical patients will live and prosper. Yet, the imminent ethical challenges that BCIs impose on patients contain a myriad of uncertainties with respect to changes in their psychology, notably their sense of autonomy and agency, given the disembodied nature of BCI technology. Interacting with the world through neurotechnological means, as it seems, is the epitomized reality of the 21stcentury. Be that as it may, it ought to be recognized that BCI is to neuroscience what human cloning is to genetics and what nuclear weapons are to nuclear physics—it is a perpetual cycle of progress and destruction in the sustainable development of futuristic societies. 

References 

1. Drew, L. (2019). The ethics of brain-computer interfaces. Nature, 571(7766), S19-S19. 

2. Burwell, S., Sample, M., & Racine, E. (2017). Ethical aspects of brain computer interfaces: a scoping review. BMC medical ethics, 18(1), 1-11. 

3. Shih, J. J., Krusienski, D. J., & Wolpaw, J. R. (2012, March). Brain-computer interfaces in medicine. In Mayo clinic proceedings (Vol. 87, No. 3, pp. 268-279). Elsevier. 

4. Cook, M. J., O'Brien, T. J., Berkovic, S. F., Murphy, M., Morokoff, A., Fabinyi, G., ... & Himes, D. (2013). 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(6), 563-571. 

5. Kögel, J., Schmid, J. R., Jox, R. J., & Friedrich, O. (2019). Using brain-computer interfaces: a scoping review of studies employing social research methods. BMC medical ethics, 20, 1-17. 

6. Klein, E., Goering, S., Gagne, J., Shea, C. V., Franklin, R., Zorowitz, S., ... & Widge, A. S. (2016). Brain-computer interface-based control of closed-loop brain stimulation: attitudes and ethical considerations. Brain-Computer Interfaces, 3(3), 140-148. 

7. Lozano, A. M., Lipsman, N., Bergman, H., Brown, P., Chabardes, S., Chang, J. W., ... & Krauss, J. K. (2019). Deep brain stimulation: current challenges and future directions. Nature Reviews Neurology, 15(3), 148-160. 

8. Vlek, R. J., Steines, D., Szibbo, D., Kübler, A., Schneider, M. J., Haselager, P., & Nijboer, F. (2012). Ethical issues in brain–computer interface research, development, and dissemination. Journal of neurologic physical therapy, 36(2), 94-99. 

9. Rakhmatulin, I., & Volkl, S. (2022). PIEEG: Turn a Raspberry Pi into a Brain-Computer-Interface to measure biosignals. arXiv preprint arXiv:2201.02228.

10. Zeng, Y., Sun, K., & Lu, E. (2021). Declaration on the ethics of brain–computer interfaces and augment intelligence. AI and Ethics, 1(3), 209-211. 

11. Fuchs, T. (2006). Ethical issues in neuroscience. Current opinion in psychiatry, 19(6), 600-607. 

12. Friedrich, O., Racine, E., Steinert, S., Pömsl, J., & Jox, R. J. (2021). An analysis of the impact of brain-computer interfaces on autonomy. Neuroethics, 14, 17-29. 13. Davidoff, E. J. (2020). Agency and accountability: ethical considerations for brain-computer interfaces. The Rutgers journal of bioethics, 11, 9. 

14. Li, G., & Zhang, D. (2017). Brain-computer interface controlling cyborg: A functional brain-to-brain interface between human and 

cockroach. Brain-Computer Interface Research: A State-of-the-Art Summary 5, 71-79. 15. Nijboer, F., Clausen, J., Allison, B. Z., & Haselager, P. (2013). The asilomar survey: Stakeholders’ opinions on ethical issues related to brain-computer interfacing. Neuroethics, 6, 541-578. 

16. Schicktanz, S., Amelung, T., & Rieger, J. W. (2015). Qualitative assessment of patients’ attitudes and expectations toward BCIs and implications for future technology development. Frontiers in systems neuroscience, 9, 64. 

17. Steinert, S., Bublitz, C., Jox, R., & Friedrich, O. (2019). Doing things with thoughts: Brain-computer interfaces and disembodied agency. Philosophy & Technology, 32, 457-482. 

18. Gilbert, F., Cook, M., O’Brien, T., & Illes, J. (2019). Embodiment and estrangement: results from a first-in-human “intelligent BCI” trial. Science and engineering ethics, 25, 83-96. 

19. Brown, T., CSNE Ethics Thrust (2014, October). Case studies in neuroscience. Center for Neurotechnology. 

https://centerforneurotech.uw.edu/sites/default/files/CSNE%20Neuroethics%20C ases_for%20distribution.pdf

The Future of Pregnancy? Ectogenesis Opens New Doors for Gestation

Journalist Jenny Kleeman was devastated when she lost her 20 week healthy baby due to appendicitis. The infection caused her cervix to open and forced her into labor—killing her baby in the process. It is women like Kleeman that ectogenesis or artificial wombs seek to aid [1]. Ectogenesis seeks to address the long term effects of preterm pregnancies—particularly on POC women—in addition to allowing more flexibility of how pregnancy is experienced in the future. However, there are some potential drawbacks in who would have access to this expensive technology, in addition to changing the social role of pregnancy. 

Ectogenesis is currently being explored with lambs at the Children’s Hospital of Philadelphia using Biobag systems. These Biobags act like an amniotic sac with fluid that the fetus would breathe in. The replacement placenta is an oxygenator plugged into the umbilical cord which delivers nutrients and allows for gas exchange. This would allow parents to watch their fetus grow to full-term if born prematurely between 20-24 weeks [1]. 

One of the biggest benefits of this approach is reducing preterm birth deaths and the associated disabilities. Premature births account for 10.5% of live births and is the leading cause of death among children under 5 [1]. Eighty-seven percent of children born prematurely experience disabilities related to their bowels, brain damage, blindness, poor growth, cerebral palsy, learning difficulties, and lung disease [2]. 

Therefore, these new incubators would allow for the process of gestation to continue—preventing future disability or long term consequences related to premature birth. This process has not yet been explored for the entire process of pregnancy which is more technically complicated, but allows for the improvement of fetus viability. Although this is far in the future, the early stage of this research provides hope for those who may be at higher risk for preterm birth including those who have diabetes, pregnancies with multiple births, high maternal age, a lack of prenatal care, struggle with chronic stress, hypertension etc [3]. 

Black women face the highest rates of maternal mortality, accounting for 14.2% of premature births [3]—higher than any other racial group. Consequently, this places more Black children born with disabilities within the 30% of Black children who are impoverished [4]. With a higher likelihood of being subjected to both poverty and disability, Black children face severe systematic oppression regarding healthcare access, education access, food security, and insurance access. Therefore, families that face complications from preterm birth may be unequipped to deal with the health-related issues associated with the birthing process with little to poor government or social assistance. Additionally, with poor prenatal care, one in nine women lacking health insurance coverage [4], and obesity being key risk factors for premature birth, Black women in poverty are systematically disadvantaged without education of reproductive resources, the capitalist marketing of cheap, unhealthy diets, and no access to healthcare. Therefore, even before birth, POC women are told that their health and the health of their children doesn’t matter by dismissing and failing to provide adequate prenatal or general healthcare. By researchers taking the initiative to find solutions related to high rates of maternal mortality and preterm birth disability, they are providing hope to numerous POC mothers by prioritizing the health of those who are affected most. This can begin to deconstruct the inherent disadvantages that non-white children in lower socioeconomic groups are facing—closing the ever-widening gap with the middle class. 

The future of ectogenesis involves the development of external wombs that can be used on embryos, which would aid in the preservation of maternal health. Not every woman’s body can handle the potentially trauma-inducing consequences of pregnancy including those who have to take life-saving medications for epilepsy, bipolar disorder, or cancer [1]. Not to mention the numerous health-related issues that may arise during pregnancy, including gestational diabetes, high blood pressure, depression, and anxiety [5]. This means that women would no longer have to choose between their desire for motherhood and the health of their fetus, and their own health. This frees women from the implications of the birthing process that wreak havoc on their mental and physical health—in addition to allowing women who are deemed to have ‘unviable’ uteruses to have children. With similar arguments being made in favor of IVF and egg freezing, this provides women with the opportunity to have a more flexible timeline and choice to their motherhood. 

In addition, this would address the harmful birthing process itself that is only the beginning of the dismissal for the symptoms women experience to be dismissed as ‘normal.’ Heartburn, incontinence, nausea, and anemia would be considered pathological in any other context, except pregnancy where they are brushed aside as being typical [1]. This constant dismissal of symptoms represents a pattern of expecting women to endure extreme pain throughout pregnancy and the birthing process By removing the experience of pregnancy and these symptoms as ‘just a part of being a woman,’ this may combat the societal dismissal of legitimate medical concerns and push individuals to take medical concerns presented by women more seriously without pushing them aside just based on their fertility and gestational status. 

Another benefit of ectogenesis is its changing of the role of parenthood. This may allow for the expansion of the archaic depiction of women as exclusively being the childbearers and caretakers. With the ability to raise children without a mother, both genders can participate equally in the birthing process—developing a similar connection and social role associated with the child. This would allow for women to be viewed beyond their reproductive capacity, in addition to preventing the social devaluation of those who are unable to carry to term or have a viable pregnancy.

However, there are some potential ethical drawbacks to artificial womb development. Currently, technologies like IVF and egg freezing which inspire this research cost anywhere from $15,000 to $30,000 per round [6]. This means that although this technology would theoretically help thousands of POC, low-income children and mothers, it would most likely only be accessible to high-income populations. This would also have the potential to widen the existing socioeconomic gaps. Fewer high-income children would be dealing with the severe disability and long-term complications associated with preterm birth, while low-income children would be left to deal with poverty and poor healthcare access—exacerbating systematic issues related to health and socioeconomic status. 

Moreover, this could create a form of ‘marking’ of the female body depending on socioeconomic status. Those who may have unplanned pregnancies or those who cannot afford ectogenesis could be placed in a social hierarchy below those who have external wombs. The physical designation of a woman as being pregnant would make these individuals easier to identify and ostracize. This could unfairly label a woman as poor, careless or an unfit mother [1]. 

Beyond this, those who don’t want to have children who opt for abortion have the potential for these embryos or developing fetuses to be saved without the mother’s consent. This would impose motherhood on someone who has exercised a choice to not be a mother—worsening the social designation of women as being pressured into their roles as mothers. With abortion being a woman’s choice, the preservation of embryos jeopardizes the mother’s wishes to not have the pregnancy at all. The possibility to preserve the embryos for donation would therefore exacerbate the already controversial dichotomy of pro life versus pro choice movements. This continues to limit the choice for women to have bodily autonomy and exercise their right to choose. 

Moreover, gestational processes have many benefits for the women who take power in their role as being able to carry and grow another human being. Many women enjoy the embodiment of being pregnant and the unique bond that forms between themselves and the child. The closeness that is experienced during those 9 months may help women connect and solidify their relationship with their unborn children. On a biological level, oxytocin levels increase during birth to promote contractions but also decrease stress and reinforce the mother-child bond after birth [7]. As a result, taking the experience away would also affect women hormonally and throughout their role as a mother. 

Although this technology is in the very early stages of its development, it signals a continuous push for innovation. Despite the potential ethical dilemmas of favoring service to the white, middle-class, in addition to changing the definition of motherhood, I believe that this still allows women more reproductive options. This would provide unprecedented opportunity for women to be appreciated beyond their gestational role, in addition to acknowledging and providing care to the POC women most impacted by premature births.

References: 

[1] Guardian News and Media. (2020, June 27). 'parents can look at their foetus in Real time': 

Are artificial wombs the future? The Guardian. Retrieved April 3, 2023, from https://www.theguardian.com/lifeandstyle/2020/jun/27/parents-can-look-foetus-real-time artificial-wombs-future 

[2] Short and long-term effects of preterm birth. UK HealthCare. (n.d.). Retrieved April 3, 2023, 

from 

https://ukhealthcare.uky.edu/wellness-community/health-information/short-long-term-eff ects-preterm-birth 

[3] A Profile on Prematurity in the United States. Prematurity profile. (n.d.). Retrieved April 3, 2023, from https://www.marchofdimes.org/peristats/tools/prematurityprofile.aspx?reg=99 [4] Child poverty increased nationally during COVID, especially among Latino and black 

children - child trends. ChildTrends. (n.d.). Retrieved April 3, 2023, from https://www.childtrends.org/publications/child-poverty-increased-nationally-during-covid -especially-among-latino-and-black-children 

[5] U.S. Department of Health and Human Services. (n.d.). What are some common 

complications of pregnancy? Eunice Kennedy Shriver National Institute of Child Health and Human Development. Retrieved April 3, 2023, from 

https://www.nichd.nih.gov/health/topics/pregnancy/conditioninfo/complications [6] Forbes Magazine. (2023, March 7). How much does IVF cost? Forbes. Retrieved April 3, 2023, from https://www.forbes.com/health/family/how-much-does-ivf-cost/ [7] Uvnäs-Moberg, K., Ekström-Bergström, A., Berg, M., Buckley, S., Pajalic, Z., 

Hadjigeorgiou, E., ... & Dencker, A. (2019). Maternal plasma levels of oxytocin during physiological childbirth–a systematic review with implications for uterine contractions and central actions of oxytocin. BMC pregnancy and childbirth, 19, 1-17.

Is Paid Maternity Leave a Right or a Privilege?

Imagine being pregnant and laboring for 12 hours experiencing contractions periodically increasing in strength and then pushing out a 6-pound baby. Then, within less than a week, still bruised and sore, you have to make the hard decision to go back to work at your minimum wage job where you stand all day. You must leave behind your newborn baby even though it breaks your heart because you cannot afford to take the needed time to recover if you are not receiving your paycheck. The sad reality is that 1 in 4 mothers return to work within 10 days of giving birth because they do not receive paid maternity leave [1]. The lack of nationally required paid maternity leave in the US is unethical because it puts an unrealistic physical and mental burden on women to work, sometimes in physically demanding jobs, soon after giving birth. This has been shown to contribute to postpartum depression, negatively impact the developing relationship between mother and child, and damage the physical health of the mother and the baby. Furthermore, it disproportionately targets women who are already financially struggling because they have no option other than to start working again to support themselves and their new child. 

Maternity leave is a period of time prior to and after a woman gives birth when she has an excused absence from work. Paid maternity leave is when the woman gets paid during this leave of absence [2]. Unpaid maternity leave is good because it ensures that the mother does not lose her job in the time allotted for the maternity leave while she is recovering and getting used to life with her new baby. However, unpaid maternity leave is not remotely as beneficial as paid maternity leave, which ensures not only job security but also financial stability during the transitional period of welcoming a new child [3]. The United States offers 12 weeks of unpaid parental leave for those who qualify, which includes most employed individuals that work at companies with 50 or more employees [1]. However, there is no federally mandated paid maternity leave for all working citizens. This makes the United States the only wealthy country in the world that does not ensure paid parental leave [3]. Although the Federal Employee Paid Leave Act does make paid parental leave accessible to all Federal employees, this still leaves out a majority of citizens because most people are not directly employed by the federal government [2]. As a result, for many the possibility of maternity leave is up to individual states and private companies [4]. At the moment the only states or districts in the US which have mandated paid maternity leave are California, New Jersey, Rhode Island, New York, Washington, Massachusetts, Oregon, and Washington DC [5]. Colorado is in the process of instituting paid maternity leave in the next year. It is important to note, though, that the length of this maternity leave is less than in other nations and less than what is recommended by experts, which is at least 6 weeks [5]. At the moment, only 23 percent of American workers have access to paid family leave, a statistic that includes federal employees [3]. The result of this is that in the US 33% of American women do not take any maternity leave and 16% of women only take between 1 and 4 weeks [6]. Overall, a majority of women in the U.S. are unable to take the medically recommended amount of time which is at least 6 weeks due to financial restraints [3]. 

International policy on paid maternity leave starkly differs from that of the US. While it is somewhat of a controversial topic in the United States, around the world 186 countries provide some form of paid maternity leave [3]. Among countries that are a part of the Organization of Economic Cooperation and Development (OCED), including Mexico, Australia, Canada, the United States, and most of Europe, the average paid maternity leave is 18 weeks. However, the U.S. is the only country from the OECD that does not provide federally mandated paid parental leave for all not just federal employees. The country with the longest weeks of paid leave after giving birth is Estonia providing 85 weeks. Furthermore, of the 7 countries in the world that do not offer a federally guaranteed form of paid maternity leave; the US is the only wealthy nation among them [6]. GDP does not explain this disparity as many other nations with lower GDPs than the US – like Brazil – have formed regulations [3]. Around the world, subsidized parental leave is considered standard and is rarely questioned. U.S. policy and culture surrounding paid parental leave is an outlier globally. 

The physical toll birth takes on the body and the recovery required are only a few of the reasons why paid maternity leave is so universally accepted around the world. In addition, many women experience postpartum hormone imbalances that can cause many symptoms including mood changes. Some more specific symptoms of a vaginal delivery include vaginal and rectal pain and bruising, incontinence, bleeding, and trouble with bowel movements [7]. Another form of delivery is via cesarean section which is a major surgery after which patients will most likely have soreness around their incision and will be instructed to take the same precautions anyone would after abdominal surgery including avoiding excessive physical activity, getting plenty of rest, not lifting anything heavy, and generally taking it easy for at least a few weeks [8]. Both forms of delivery result in difficulty standing or being mobile for extended periods of time, which make it necessary for women to rest following delivery. However, the specifics of any of these symptoms depend on the duration of delivery and whether any complications occurred [7]. Generally, healthcare professionals recommend that women have at least 6 weeks of maternity leave to properly recover. However, most women still do not fully return to some form of full physical ability until at least 6 months after delivery and sometimes more [4]. In addition, other studies have linked women taking less than eight weeks of paid maternity leave to poorer physical and mental health.

Paid maternity leave is not only beneficial for the woman but the relationships and emotional health of the entire family. Paid maternity leave has been correlated with secure attachment between mother and child, and greater empathy and academic success for the child [1]. Fathers or non-birthing parents who are able to take leave tend to be more involved throughout their child’s life. Parenting the child is viewed as a shared effort by both parents instead of what occurs in traditional, patriarchal families where women take on a vast majority of the child-rearing and household work [3]. Furthermore, the relationship between the parents is also shown to be much more stable with much lower rates of physical and emotional abuse [1]. Having the time that paid parental leave affords is important for the emotional bonds between the parents and their child.

The health of the baby is also positively correlated with paid parental leave. Babies whose parents take leave have an increased chance of being up to date on their vaccinations, being engaged in breastfeeding, securing maternal attachment, having better infant health, and displaying fewer behavioral issues [1]. This time in a baby's life is one that sets the trajectory for the rest of their lives. Putting in place federal requirements for paid maternity leave will improve the health and well-being of future generations and, therefore, enhance the development of our nation [3]. 

The benefits of paid maternity leave are not only health-related but also financially related. After giving birth, many women need time off to recover and have to weigh forfeiting their job. However, many who do continue to work are paid less or given fewer opportunities to advance as having a child is seen as a liability. This pattern is known as the motherhood penalty. This so-called penalty is exemplified by the fact that each year women and their families lose an estimated $22.5 billion in wages after having children [6]. From a financial standpoint, paid parental leave creates continuity in income and employment,  removes financial punishments that women experience from having children, and provides stability during this major life change [3]. 

The impacts of having no federally mandated paid maternity leave are not felt equally by all pregnant people. Lower-income women disproportionately experience the impact financially as well as suffering relatively more mental and physical health repercussions. Studies show that lower-income women are 58% more likely to forgo maternity leave [6]. Of employees who make $30,000 or less annually, 38% receive any form of paid leave. Juxtaposed with the fact that 74% of females making 75k or more receive paid maternity leave, one can assume there is a disparity in job benefits. Additionally, higher-income individuals may have the resources to stay home for a period of time to recover even if they are not getting paid - a possibility not afforded to their lower-income counterparts. This is especially concerning because lower-income women who give birth generally already have limited access to healthcare throughout their pregnancy and experience more birth complications. It follows that lower-income individuals would require a longer period of time for childbirth recovery but instead receive even less time. This plays into the inter-generational health disparity based on socioeconomic class. When these women are not able to recover properly, both they and their newborns have long-term psychological and physical health impacts, which they potentially pass on to future generations [1]. 

Based on the evidence presented thus far, including medical necessity and the emotional and physical benefits for the mother and the baby, there is clear evidence that paid maternity leave is a human right. Foremost, it is essential to ensure that basic health needs are met equally across socioeconomic classes. The lack of nationally required paid maternity leave also violates all 4 of the central bioethical principles outlined by Beauchamp and Childress which are known as the Georgetown Mantra [9]. These are central principles in bioethics used to evaluate systems and situations. These 4 principles are nonmaleficence, beneficence, justice, and autonomy. Nonmaleficence means do not harm [9]. Nonmaleficence is not being met in this situation, as many levels of harm are being done to women and their children in the current system. Beneficence means to do good [9]. This is also not being met because if one is violating the rule to do no harm then one cannot be doing good. Justice, as defined as ‘rendering unto each what is due,’ is not being met either. A lack of paid maternity leave gives no regard to the health, safety, or best interest of birthing people [9]. The government is not doing its job of protecting vulnerable members of society. Finally, autonomy is also not being met because that would require the decision to return to work to be made without extreme pressure from outside factors [9]. In this situation, many women are under extreme financial pressure to return to work and  cannot afford to take a prolonged period of time off to recover. In no way do current policies on paid maternity leave adhere to any central bioethical principles and can, therefore, be evaluated as unethical. 

While the argument in favor of nationally mandated paid maternity leave is strong in terms of the benefits for individual women, their children, and their families, there is also a strong argument for the societal benefit [5]. As a country, we require women to both work in order to sustain our economy and to have children to sustain our population. The workforce of the United States requires women in order to maintain their economic standing in the world and requires women to bear the children of the next generation, which will also be the workforce of the next generation [5]. Societies of countries that have federally imposed mandatory paid maternity leave experience tangible benefits including increased economic productivity which the U.S. is currently overlooking. 

Paid maternity leave required by the federal government serves the interest of the physical, mental, and financial health of the women giving birth, their children, and their families. Maternity leave is not a vacation or a luxury, but a human right necessary for recovering from the birth process and for nurturing the next generation of the population. While some may argue that it is financially impossible, many countries with lower GDPs have already ensured that women have access to this right. Ethically, for the birthing people, the children, and the society of the United States and the world, the only choice is to prioritize women’s health and women’s rights and pass legislation to require paid maternity leave for all in the United States. Women should not be shamed or prevented from having a career or having children. Women deserve to be treated with dignity and respect and deserve to have time to recover after giving birth without fear of repercussions. 

Work Cited

1. Leigh, S. (2020, March 9). National Paid Maternity Leave Makes Sense for Mothers, Babies, and Maybe the Economy. National Paid Maternity Leave Makes Sense for Mothers, Babies and Maybe the Economy | UC San Francisco. https://www.ucsf.edu/news/2020/03/416831/national-paid-maternity-leave-makes-sense-mothers-babies-and-maybe-economy

2. U.S. Department of Labor. (2009). FMLA (Family & Medical Leave). U.S. Department of Labor. https://www.dol.gov/general/topic/benefits-leave/fmla

3. Pinsker, J. (2021, November 9). Parental Leave Is American Exceptionalism at Its Bleakest. The Atlantic. https://www.theatlantic.com/family/archive/2021/11/us-paid-family-parental-leave-congress-bill/620660/

4. Froese, M. (2016, October 19). Maternity Leave in the United States: Facts You Need to Know. Healthline; Healthline Media. https://www.healthline.com/health/pregnancy/united-states-maternity-leave-facts

5. Arneson, K. (2021, June 28). Why doesn’t the US have mandated paid maternity leave? Www.bbc.com. https://www.bbc.com/worklife/article/20210624-why-doesnt-the-us-have-mandated-paid-maternity-leave

6. Kolmar, C. (2017, February 7). Average Paid Maternity Leave In The U.S. [2021]: U.S. Maternity Leave Statistics – Zippia. Zippia. https://www.zippia.com/advice/average-paid-maternity-leave/

7. Mayo Clinic. (2018). Postpartum care: After a vaginal delivery. Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/labor-and-delivery/in-depth/postpartum-care/art-20047233

8. Mayo Clinic Staff. (n.d.). 5 changes to expect after a C-section. Mayo Clinic. Retrieved April 16, 2023, from https://www.mayoclinic.org/healthy-lifestyle/labor-and-delivery/in-depth/c-section-recovery/art-20047310#:~:text=Here%27s%20what%20to%20expect%3A%201%20Vaginal%20discharge.%20After

9.  Burks, D. (n.d.). Beauchamp and Childress The Four Principles. https://www.uc.edu/content/dam/refresh/cont-ed-62/olli/22-winter/bioethics%20four%20principles.pdf

Those responsible for their poor health outcomes should be entitled to equal healthcare assistance

The United States spent $226.7 billion on smoking-related healthcare per year in 2014 [1].  $125.7 billion of those costs were covered by Medicare or Medicaid [1].  In other words, over 50% of smoking-related healthcare costs were funded by taxpayer money –whether those taxpayers smoke or not [1].  Should nonsmokers be responsible for the healthcare of smokers?  The ethical framework luck egalitarianism   states that any inequality between two individuals should be neutralized unless that inequality arises from a free choice made by one individual [2].  Thus, those who freely choose not to smoke should not be responsible for the healthcare of those who freely do.  The logic seems simple enough; however, I argue that this framework should not serve as the basis of healthcare policy.

  In the following paragraphs, I will first articulate the luck egalitarianism framework, with particular attention to the concepts of voluntary choice and moral neutrality.  I will demonstrate how this framework might be applied to health policy.  I will then argue that, at a deeper examination, the luck egalitarianism framework is impractical in two ways.  (1) The identification of the point at which one individual’s lifestyle choice is free and voluntary is arbitrary [3].  If we cannot precisely identify free choice, we cannot precisely identify inequality.  (2) The reasoning used to determine, out of all ‘imprudent’ free choices, which are deserving of an individual’s unequal treatment is arbitrary [4].  We cannot determine which inequalities to treat unequally without making moral, arbitrary judgments about an individual’s lifestyle [4].  For these reasons, I will argue that luck egalitarianism does not serve as a pragmatic healthcare policy framework.  Thus, smokers and others responsible for their poor health outcomes should  be entitled to equal healthcare assistance.

The luck egalitarianism framework.

   Theorists Joar Björk et al. present a principled view of luck egalitarianism that aims to avoid moral judgment  of an individual’s lifestyle via an infringement argument.  Luck egalitarianism states that inequalities between individual X and individual Y should be neutralized unless, say, X makes a choice that holds them responsible for the development of inequality [2].  Luck egalitarianism is not meant to punish nor morally judge the lifestyle choice of X, and, thus, seeks to be morally neutral [4].  Instead, the lifestyle choice of X only becomes ‘imprudent’ if it negatively infringes upon individual Y, who has made different choices and who lives a lifestyle that is different from, or unequal to that of X [2].  Björk et al. connect free choice directly to infringement.

  Individual X infringes on the lifestyle of individual Y by freely choosing to consume common resources [2].  These resources would otherwise be available to Y [2].  To perform this infringement, X must satisfy the following conditions:

I.   X’s choice must lead to a high risk of common resource consumption [2].

II.  X’s choice must risk significant common resource consumption [2].

III. X must be able to easily avoid this choice [2].

IV. X must be aware that their choice leads to a high risk of significant resource consumption and is avoidable [2].

   Conditions I-IV offer principles by which one can hold an individual personally responsible for their choice without claiming the individual’s lifestyle to be morally good or bad.  Note that conditions I-IV hinge upon whether an individual has consumed beyond a previously defined maximum of common resource use, not whether their choice is valued by society.  If luck egalitarianism were to exempt holding personal responsibility against individuals whose choices of significant resource consumption benefit society, then we would constantly have to determine which choices really do benefit society [4].  This would destroy the moral neutrality—or avoidance of moral judgment—that luck egalitarianism seeks to uphold [4].

   Luck egalitarianism discriminates between the individual who chooses to smoke and the individual who chooses not to smoke.  Assume that it is widely known that smoking is a leading risk factor for lung cancer [4].  Moreover, lung cancer treatment draws upon a pool of common healthcare resources [4].  These healthcare resources are finite [4].  It is known that treating the lung cancer of one individual may use significant resources and deprive equal lung cancer treatment to other individuals [4].  It is possible for a nonsmoker to develop lung cancer.

   Individuals who choose to smoke do so knowing that they risk development of lung cancer, and by extension, deprive individuals who choose not to smoke of healthcare resources for lung cancer treatment [4].  A policy in which nonsmokers are prioritized over smokers in lung cancer treatment can address this situation [2].  In this policy, smokers and nonsmokers are recognized as unequal groups due to the smokers’ free choice to smoke.  Smokers and nonsmokers are treated unequally in accordance.

Objection to the luck egalitarianism framework.

  In theory, the above healthcare policy seems relatively just.  However, in practice, healthcare policies founded on luck egalitarianism encounter the following issues:

I.  How can we be certain that an individual’s imprudent choice was made freely?

II. How can we determine, out of all possible imprudent choices, which should cause the individual to be treated unequally?

   I will first address Question I.  An individual’s independent choice to light a cigarette and smoke seems evidence enough for free choice assuming that the following conditions are satisfied.  The individual understands that smoking may lead to significant healthcare costs. The individual is not physically coerced to smoke by another individual, and can, therefore, avoid smoking. 

   However, philosopher Daniel Wikler questions to what extent lifestyle choices are truly free.  Individuals are subject to falling into automatic and thoughtless habit [3].  Many of these habits are learned from an individual’s mentors, peers, or environment [3].  So the individual who chooses to smoke may not have done so by their own accord, but instead because they were indoctrinated from birth into a culture that promotes smoking as a social custom.

  Additionally, assume that an individual makes a truly free choice to smoke one cigarette.  Assume that smoking one cigarette alone will not cause lung cancer.  Even smoking a few cigarettes alone will not cause lung cancer.  However, the individual happens to have a mutation on an allele that increases susceptibility to nicotine addiction and the individual falls into the mindless habit of smoking several packs of cigarettes a day.  We are certain that the individual’s development of lung cancer is due to their developed habit of copious smoking.  Can we truly say that the individual’s later actions of smoking, which caused lung cancer, were freely chosen [3]?  The individual is subordinated to the disease of addiction and their decision-making is hindered [3].

   The above arguments demonstrate that we cannot be certain that an individual’s choice to smoke is free and voluntary.  If we are not certain that an individual’s choice to smoke is voluntary, then we cannot hold that individual responsible for their poor health.  Thus, we cannot treat a smoker and nonsmoker unequally because that inequality is not founded in free choice.

   Moreover, smoking contributes to lung cancer along with several other risk factors, such as genetics and air pollutants [2, 5].  Even if an individual’s choice to smoke is free and voluntary, we cannot be certain that smoking was the actual cause of their development of lung cancer [2].  By luck egalitarianism, we cannot hold an individual personally responsible for a health condition that was unrelated to their free choices.  This leads to the same conclusion: we cannot treat a smoker and nonsmoker unequally because that inequality is not founded in free choice.  Thus, healthcare policy cannot deprioritize smokers in lung cancer treatment.  Individuals who may (or may not) be personally responsible for their poor health should be entitled to equal healthcare. 

   I will now address Question II.  By Björk et al., an individual’s choice is imprudent if the individual is aware that their choice leads to a high risk of significant consumption of common resources and if that choice is easily avoidable [2].  I argue that this definition of an imprudent choice claims not to be a moral judgment of lifestyle [4].  However, luck egalitarianism’s moral neutrality makes it difficult to determine which imprudent choices should cause an individual to be treated unequally.

   Philosopher Stephen Wilkinson presents the reverse restoration argument, which can be written in terms of Björk et al.’s luck egalitarianism framework.  This argument assumes it to be widely known that smokers die earlier [4].  In the United States, “life expectancy for smokers is at least 10 years shorter than for nonsmokers” [6].   This argument also assumes that living into old age can increase healthcare need and consequently incur significant health costs [4].  In the United States, senior care for one individual can cost $72,000 per year [7]. 

  It is likely that costs associated with old age for one individual cumulatively account for more healthcare spending than costs associated with a smoker who dies young [4].  Nonsmokers can freely choose not to smoke.  Their choice is avoidable, and they understand that by increasing the likelihood that they will live into old age, they risk significant consumption of common resources [4].  Thus, an individual’s choice not to smoke can be classified as imprudent.  It can be equally claimed that those who choose not to smoke deprive smokers of healthcare resources [4].  Because nonsmokers’ free choice against smoking creates inequality, nonsmokers should be treated unequally [4].

   The above argument shows that luck egalitarianism can be reversed in a way that is not likely to be accepted by healthcare policymakers [4].  It seems as though we must be able to select between ‘imprudent choices’ that should cause an individual to be treated unequally and those that should not. 

   Wilkinson recognizes that this selection can be attempted via consideration of social value [4].  A society may value not smoking since not smoking is largely beneficial to society (no secondhand smoke) while it may not value smoking [4].  Therefore, individuals who choose not to smoke would be prioritized in healthcare such as lung cancer treatment.  Moreover, if choosing between treatment of a smoker who is a parent and a smoker who is not a parent, because parenting benefits society, the parent who smokes would be treated first [4].  This type of value judgment begins to morally examine an individual’s lifestyle rather than the apparent consequences of their free choices [4].  Furthermore, social values fluctuate, and moral judgment of an individual’s lifestyle would be based on an arbitrary criterion [4].  Such judgment contradicts luck egalitarianism’s commitment to moral neutrality [4].

   Even if consideration of social values did not threaten the commitment to moral neutrality, positioning healthcare workers as moral police limits free choice.  If all individuals answered to the moral police, free choice would be eradicated, and luck egalitarianism as a framework becomes irrelevant.  Thus, luck egalitarianism does not serve as a practical healthcare policy framework.  Those who may or may not be personally responsible for their poor health should be entitled to equal healthcare. 

   Luck egalitarianism holds that individuals who are personally responsible for their poor health should not be entitled to healthcare equal to that of individuals who are not personally responsible for their poor health [2].  An individual’s personal responsibility is determined by their free choice and awareness that their choice risks significant consumption of common resources and is easily avoidable [2].  Luck egalitarianism aims not to judge lifestyle choices, but to measure when an individual’s free choice might infringe upon another’s ability to benefit from common resources [2].  However, when applied to healthcare policy, luck egalitarianism cannot, with certainty, identify a choice as free [3].  It also cannot determine which choices should lead to unequal treatment without morally judging lifestyle [4].  Thus, smokers and others deemed personally responsible for their poor health should be entitled to equal healthcare assistance.

References:

[1] Xu, X., Shrestha, S. S., Trivers, K. F., Neff, L., Armour, B. S., & King, B. A. (2021). U.S. healthcare

spending attributable to cigarette smoking in 2014. Preventive medicine, 150, 106529.

https://doi.org/10.1016/j.ypmed.2021.106529

[2] Björk, J., Helgesson, G., & Juth, N. (2020). Better in theory than in practise? Challenges when applying

the luck egalitarian ethos in health care policy. Medicine, health care, and philosophy, 23(4),

735–742. https://doi.org/10.1007/s11019-020-09962-3

[3] Wikler D. (2002). Personal and social responsibility for health. Ethics & international affairs, 16(2),

47–55. https://doi.org/10.1111/j.1747-7093.2002.tb00396.x

[4] Wilkinson S. (1999). Smokers' rights to health care: why the 'restoration argument' is a moralizing

wolf in a liberal sheep's clothing. Journal of applied philosophy, 16(3), 255–269.

https://doi.org/10.1111/1468-5930.00128

[5] Bade, B. C., & Dela Cruz, C. S. (2020). Lung Cancer 2020: Epidemiology, Etiology, and

Prevention. Clinics in chest medicine, 41(1), 1–24. https://doi.org/10.1016/j.ccm.2019.10.001

[6] U.S. Department of Health and Human Services. (2020, April 28). Tobacco-related mortality. Centers 

for Disease Control and Prevention. Retrieved April 8, 2023, from

https://www.cdc.gov/tobacco/data_statistics/fact_sheets/health_effects/tobacco_related_mortality/index.htm

[7] Rowland, C. (2023, March 20). Senior care is crushingly expensive. Boomers aren't ready. The

Washington Post. Retrieved April 8, 2023, from

https://www.washingtonpost.com/business/2023/03/18/senior-care-costs-too-high/

Anorexia as a Long-term Illness: A Case for Harm Reduction in the Treatment of Anorexia Nervosa

Anorexia Nervosa (AN), also known as anorexia, is classified as a mental illness and restrictive eating disorder in the DSM-5. The illness is characterized by “restriction of energy intake relative to requirements, leading to a significant low body weight in the context of age, sex, developmental trajectory, and physical health” [1]. In addition to an abnormally low body weight, an intense fear of gaining weight and a distorted perception of body size is also common [2]. 

In a survey of 9,282 English-speaking adults in the U.S., lifetime prevalence estimates for DSM-IV anorexia nervosa were around 0.9% for females and around 0.3% for males [3]. Patients with anorexia often go to such extremes to maintain a low body weight that other health complications occur, such as fatigue, bone loss, anemia, and kidney or heart problems. These complications affect the individual’s daily functioning, can have long lasting health effects, and can cause sudden death, even if the individual is not severely underweight [4]. 

In extreme cases, severe and enduring anorexia nervosa (SE-AN) is diagnosed in patients who have had anorexia for 6 years or more [2]. Patients with anorexia also have the “highest death rate of any mental health disorder; the mortality rate for AN is 5.6% per decade of illness (i.e. the risk of death increases the longer one has been ill)” [2]. The low recovery rates and high mortality rates make anorexia one of the most challenging and lethal mental health disorders, further emphasizing the need for a comprehensive and compassionate treatment plan.

While treating anorexia and SE-AN, clinicians must weigh a variety of ethical concerns to determine the most appropriate form of medical intervention. Treating anorexia often introduces the ethical and medical question of whether the use of force is justified in the clinical setting. In the modern clinical setting and general Western society, personal autonomy is highly valued, which the use of forced care violates. The use of force may also cause additional trauma to the patient leading to long-term health complications and mistrust of medical caregivers.

These ethical considerations are especially important when treating SE-AN given that this version of anorexia makes patients even less likely to make a full recovery. The long term nature of anorexia suggests that a different treatment philosophy that avoids the use of force may be necessary to care for the patient and ensure their quality of life [2]. 

One potential method to treat anorexia and SE-AN is a harm reduction approach, which is defined as “a philosophy and an approach to policy, programs, and practices that aims to reduce health, social, and economic harms” [5]. A harm reduction approach to chronic anorexia would primarily emphasize the improvement of quality of life. For example, a harm reduction model would allow patients to maintain an agreed upon weight that may not be clinically recommended, but would allow the patient to have quality of life [2]. 

Harm reduction is already implemented in the treatment of substance use disorders (SUDs) and applying this methodology to anorexia is not the typical standard of care. When taking a harm reduction approach to instances of SUD, individuals who use drugs are not reprimanded, but instead provided with supervised injection centers and taught safer methods to use drugs [2]. The goal is to lessen the stigma around SUD while reducing the possibility and severity of harm. Harm reduction is inexpensive, easy to implement, and has a high positive impact on individuals and the overall community [4].

Another example of harm reduction in the clinical setting is adjusting a diabetes patient’s diet when a clinician recognizes that the patient is unlikely to completely abstain from certain foods [2]. Suggesting that a patient reduce the consumption of certain foods can bridge the gap between the patient’s and clinician’s goals, fostering rapport, mitigating harm to the patient, and protecting the patient-clinician relationship in the long-term.

While implementing a harm reduction treatment plan appears promising for the treatment of anorexia, any harm reduction treatment plans must consider the inherent ethical challenges of treating anorexia and work to mitigate them. A typical concern about harm reduction is that this method of treatment normalizes the behavior and does not do enough to discourage restrictive eating, suggesting a more forceful approach to care is more clinically and ethically appropriate. This ethical concern is not unique to harm reduction and undergirds all forms of anorexic treatment. Respecting patient autonomy is a central principle in the United States; however, anorexia is a form of mental illness characterized by disordered thinking. In addition to this, the physical effects on the body from starvation can alter the patient’s ability to think clearly, potentially perpetuating restrictive eating behaviors [4].

Harm reduction does, though, encourage dialogue between the patient and the members of their care team. If clinicians took a more forceful approach to treating anorexia, which is the more common treatment, not only would clinicians cause the patient distress, but they would also damage any future possibility of having an open, trusting, and collaborative clinician-patient relationship. A relational approach to autonomy would better serve the treatment of anorexia than an individualistic approach. Relational autonomy is a concept of autonomy that assumes that individual decisions will inevitably be influenced by our social circles [2]. A harm reduction treatment plan implements a relational approach to autonomy by opening dialogue and showing compassion and respect for the patient, enabling the patient to have a support network they can trust. By prioritizing compassion, trust, and collaboration clinicians create an environment where the patient can be exposed to ethical and social norms that encourage a healthy relationship with food [2].

Perhaps the greatest challenge, though, to treating anorexia is not the effects that the disease has on the patient, but the effects the disease has on the family and care team. A harm reduction approach can help mitigate the strain on support and care team members by providing a framework to protect the patient’s autonomy while minimizing harm. A harm reduction approach is not giving up on the patient, but a way to acknowledge the inherent long-term nature of anorexia nervosa. Forced care can be distressing for patients and family members, so implementing a harm reduction treatment plan minimizes the potential long-term negative consequences to the patient and their support network.

Given that anorexia is a long-term illness with a low full recovery rate, any attempts to treat the disease should be guided by compassion and view treatment from a long-term perspective. Treating anorexia from a long-term perspective challenges the necessity of forced care. Forced clinical interventions may be ethically and clinically justified when a patient’s decision-making capacity is impaired, or when the risk of death or serious morbidity is high, and the likelihood of benefits outweighs the risk of harm [7]. Forced clinical interventions should, however, remain as a last resort in the treatment of anorexia given the long-term nature of the disease. Anorexia comes with a variety of psychological comorbidities and results from disordered thinking, so a secure patient-clinician relationship is essential to making any steps towards recovery. In implementing a harm reduction approach, clinicians are better able to guide a patient towards a healthier weight and attitude towards food.

Works Cited

1. National Center for Biotechnology Information. (n.d.). Table 19, DSM-IV to DSM-5 anorexia nervosa comparison - DSM-5 changes ... National Library of Medicine. Retrieved April 15, 2023, from https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t15/ 

2. Bianchi, A., Stanley, K., & Sutandar, K. (2020). The ethical defensibility of harm reduction and eating disorders. The American Journal of Bioethics, 21(7), 46–56. https://doi.org/10.1080/15265161.2020.1863509

3. Hudson, J. I., Hiripi, E., Pope, H. G., & Kessler, R. C. (2006, July 3). The prevalence and correlates of eating disorders in the national comorbidity survey replication. Biological Psychiatry. Retrieved April 24, 2023, from https://www.sciencedirect.com/science/article/pii/S0006322306004744?via%3Dihub 

4.  Mayo Foundation for Medical Education and Research. (2018, February 20). Anorexia nervosa. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/anorexia-nervosa/symptoms-causes/syc-20353591

5. Buchman, D. Z., & Lynch, M.-J. (2018). An ethical bone to PICC: Considering a harm reduction approach for a second valve replacement for a person who uses drugs. The American Journal of Bioethics, 18(1), 79–81. https://doi.org/10.1080/15265161.2017.1401159

6.  Home. Harm Reduction International. (2023, March 22). Retrieved March 22, 2023, from https://hri.global/

7.  Lavoie, M., &; Guarda, A. S. (2021). How should compassion be expressed as a primary clinical and ethical value in anorexia nervosa intervention? AMA Journal of Ethics, 23(4). https://doi.org/10.1001/amajethics.2021.298

Generative AI in Healthcare: Worth the Risk?

In an overburdened healthcare system, health care providers are being asked to do more things with less time. An overwhelming administrative burden can diminish equity and efficiency within a healthcare practice. In the modern world, we have a new ecosystem of tools at our disposal, generative AI being of the emerging technologies. Generative AI like ChatGBT have become groundbreaking for content creation. The creation of audio, text, images and simulations have been accelerated through generative AI in a wide range of public U.S. systems. But organizing and compartmentalizing information brings a downfall that we ourselves recognize as perhaps inevitable: bias. At what point does generative AI transition into another bias-coding organism, in which forms of discrimination taint patient diagnosis or treatment plans?  

Many are wary of valuing efficiency over equity. Others encourage use of AI in healthcare, as practice makes perfect. As we take our first steps in AI development, generative AI has fallen into the medical world. ChatGBT’s release in 2022 expanded generative AI usage in a multitude of public sectors, healthcare being one of many. Clinicians must navigate complex webs of patient information while balancing ethical concerns. Little concern has sparked regarding use of AI for objective, administrative tasks. Healthcare is data and text rich. Scanning medical imaging or drafting pre-authorization requests for insurers are some of the lower risk possibilities. Saurabh Johri, chief scientific officer at Babylon Health, highlights the benefits of generative AI for administrative tasks, specifically for tele-medicine visits: “we have also developed generative AI models optimized for telemedicine consultations to automatically summarize patient-clinician consultations in near-real time, reducing the administrative burden placed on clinicians” [1]. Furthermore, many patients feel lost about their diagnosis or healthcare plan due to communication gaps with physicians. Thus, another outcome is using generative AI to merge this gap between physician and patient vocabulary. Generative AI can “support clinical decision-making [and] enhance patient literacy with educational tools that reduce jargon,” [2] said Jacqueline Shreibati, M.D., senior clinical lead. 

But eventually we reach the aspect of medicine that is not so black and white, where evaluating a person’s condition becomes less objective. Personalized medicine and patient diagnoses are unique to every patient, where treatment plans are crafted on a personal level. ChatGBT’s use has been contentious for patient diagnosis, where a patient’s symptoms act as input and the algorithm produces a diagnosis as output. 

Is this too good to be true? Some highlight that generative AI cannot stand in the shoes of a physician to make a diagnosis. First, forms of racial bias have emerged. Racial bias in particular has hindered the use of generative AI in healthcare; senior clinical lead at Google emphasizes this point: “A lot of [health] data has structural racism baked into the code” [2]. The National Institute for Health Care Management (NIHCM) describes AI use in healthcare now as a major risk: “embedding race into health care data and decisions can unintentionally advance racial disparities in health” [3]. 

How can this be? Generative AI in healthcare is often used to assess a patient’s risk for a condition, or to identify a patient’s general health needs. Therefore, if an algorithm receives input regarding trends where a health condition and racial background correlate, outcomes can be skewed. NIHCM highlighted this in a 2019 study, in which an algorithm replaced a physician’s judgment. Health risk scores were assigned to Black and White patients. Black patients, who were significantly sicker than White patients, received the same risk score. This was ultimately due to a trend embedded in the algorithm: Black patients have lower health care spendings than White patients for a given level of health, likely due to disparities in the health care system. Without this element of bias in the algorithm, Black patients would have received around 30% more care [3]. 

Other limitations of generative AI are simply due to the nature of technology. Some point out that a patient’s narrative and personal condition cannot be reduced to patterns and facts. Although ChatGBT scores well on national medical exams, a patient’s pain is often multifaceted. This was highlighted by ER doctor Joshua Tamayo-Sarver, who experimentally tested ChatGBT’s patient diagnosis abilities. Taymayo-Sarver presented medical narratives and symptoms from 40 of his patients to ChatGBT. Only 50% of ChatGBT’s diagnoses were correct. He concluded that “the art of medicine is extracting all the necessary information required to create the right narrative…we must be very careful to avoid inflated expectations with programs like ChatGPT, because in the context of human health, they can literally be life-threatening” [4]. 

ChatGBT has sparked conversation for generative AI. We face a crowded healthcare system built by hardworking clinicians. Many are tempted to implement AI into all aspects of health care and work to eliminate algorithm bias. Others highlight the fragility of human lives, in which algorithms are unfit to evaluate deeply personalized human conditions. As AI continues its exponential growth, we fall into a cost-benefit analysis of unfamiliar territory. Will human growth in medicine be supported or jeopardized through AI implementation? 

Work Cited

1. Siwicki, Bill. “A Primer on Generative AI – and What It Could Mean for Healthcare.” Healthcare IT News, 9 Mar. 2023, https://www.healthcareitnews.com/news/primer-generative-ai-and-what-it-could-mean-healthcare.

2. King, Robert. “Google, Microsoft Execs Share How Racial Bias Can Hinder Expansion of Health Ai.” Fierce Healthcare, Questex, 23 Feb. 2023, https://www.fiercehealthcare.com/health-tech/google-microsoft-execs-share-how-racial-bias-can-hinder-expansion-health-ai.

3. Jones, David S. “Racial Bias in Health Care Artificial Intelligence.” NIHCM, https://nihcm.org/publications/artificial-intelligences-racial-bias-in-health-care.

4. Tamayo-Sarver, Joshua. Chatgpt in the Emergency Room? the AI Software Doesn't Stack Up. FastCompany, https://www.fastcompany.com/90863983/chatgpt-medical-diagnosis-emergency-room.