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. 

Ethics of Transparency in Dining Halls: Choice-Prohibitive Situations

How often do we consider that the food currently on our plates was the product of rigorous genetic and scientific experimentation? The food is, in a sense, designer. We could be consuming food that was designed, selected, and tested to perfection in the same way that any other product made available to us is. Typically, eating ‘natural’ ingredients implies eating freshly grown food from farmer’s markets or ‘organic’ producers. Consuming ‘fresh’ food is marketed throughout the University of Virginia’s dining halls – but is the food that we consume truly organic, or is it a designer product? 

Genetically Modified Organisms (or GMOs) are defined by the U.S. Department of Agriculture as “an animal, plant, or microbe whose DNA has been altered using genetic engineering techniques” [1]. For thousands of years, human beings have utilized selective breeding methods to select for particular phenotypes, so in a sense we have been genetically modifying for thousands of years already [2]. For example, the reason that bananas are yellow is due to genetic modification through years of artificial selection; initially bananas were green and red. Recently, selective breeding has been augmented by modern biotechnology which grants scientists the capability to directly modify the genetic code. Both the crops and animals that produce the food purchased in our local groceries stores – subsequently served in school meals – potentially bear the signature of purposeful genetic adaptation. 

Genetic alteration has allowed for massive advancement in food production, helping increase yields and production of food within the confines of the agricultural space currently available to us. For instance, many genetically modified plants resistant to herbicides allow for greater yields of crops. This is an important innovation, especially with a growing population and already present issues with food insecurity. In the United States, 10.2% of households are food-insecure, 6.4% are households with low food security, and 3.8% of households have very low food security [3]. Genetically Modified Organisms provide a solution that takes us one step closer towards ending food insecurity, as well as provides a potential and feasible solution to solving world hunger. 

Despite the benefits, there are still fears and trepidation as people question the safety of genetically modified food. There are legitimate concerns of the potential allergenic properties of genetically modified organisms, as well as the transfer effects of antibiotic resistance whereby modified organisms could pass resistance to bacteria. Ultimately, there are potentially negative consequences for human health that “could result from differences in nutritional content, allergic response, or undesired side effects such as toxicity, organ damage, or gene transfer” [4]. Many of these fears can be quelled by current science which affirms that genetically modified organisms are safe. However, genetically modified organisms, specifically those that are experimentally-derived, have not been incorporated into diets for long enough to have complete certainty as to potential ramifications on health in the future. Furthermore, many laws and regulations which are designed to govern the world of biotechnology are too archaic and outdated to successfully monitor and control the safety of the food being manufactured. There is a desire and push for greater research and labeling to present the dangers of genetically modified foods to consumers when they are purchasing food in grocery stores. Providing people with that information, I will argue later, is incumbent upon the manufacturer, the Food and Drug Administrator, grocery stores, food distributors, and retailers who utilize those genetic technologies.

The dining halls of the University of Virginia have monopolized the food market filled with students of all years, majors, and dietary preferences without providing full transparency. At the University of Virginia, first-year students are required and expected to purchase an ‘all inclusive dining plan,’ which includes unlimited swipes into dining halls each day. This plan is incredibly expensive and, because first-years are also not allowed to have cars on grounds and are therefore unable to drive to grocery stores, they are left without the option to dine elsewhere. This leaves them without the option to choose whether or not they would like to eat in the dining hall because it is essentially the only on-campus dining option. Thus, the University has effectively monopolized the market and ended any notion of “choice” that students may have in food choice when living on grounds their first-year. 

Nutritional information about the meals being served in the dining halls is available, but there is no information provided as to whether the foods are genetically modified or not. This prevents students from making informed decisions about whether or not they would like to eat genetically modified food. If a student is vegetarian and does not want to eat meat, they are provided with the information necessary to eat within that chosen dietary preference. While if a student did not want to eat genetically modified food, that information is not given to them in order to make an informed decision about the food they would like to consume. In public health, it is a common tactic when approaching issues with food or dietary habits to treat “food as medicine” [5]. Treating food as medicine and viewing people as patients, one can consider the ethical implications of not providing information to students as they make uninformed decisions about what food they would like to eat. 

When treating food as medicine and those who eat in dining halls as patients, lack of informed consent is clearly displayed. If a patient is involuntarily given a medicine, the patient is assumed to have the right to choose treatment – and if that is not given, then the patient will be informed of the implications of the treatment being received [6]. These are basic tenets of informed consent and are not made available to the ‘patients’ in the case of the dining hall, as students are not fully informed of the nature and background of the food being made available to them. 

This is an issue of transparency – UVA Dine (University of Virginia’s dining hall company) has an ethical obligation to inform students if they do not provide them with a choice. The UVA Dine’s website provides no information as to whether or not genetically modified organisms are used [7]. UVA’s distributors include 4PFoods which is a certified organic producer, which means they can’t use any synthetic pesticides, chemical fertilizers or GMOs [8]. However, other distributors like  Produce Source Partners and Cavalier Produce have no information regarding their use of  genetically modified organisms in their food on their websites [9,10]. Students are owed transparency and greater information regarding the use of genetically modified food in order for them to make informed dietary decisions. Furthermore, in the situation in which you treat food as medicine, you are not providing students with the information allowing for informed consent. UVA Dine is not upholding its ethical obligation to inform. 

I believe that Genetically Modified Organisms should be utilized in dining halls, but information and transparency must be given. Through a utilitarian perspective, genetically modified foods allow for the great amount of healthy food to be offered at a low price. The dining halls would advertise themselves as organic, if they were not using genetically modified organisms [11, 12]. UVA Dine says that they prioritize organic food, but this does not mean that all of their food is organic. I believe that in a situation like this, in which students are devoid of choice, they must be given all relevant information. Having a lack of information and choice creates a situation in which students who dine at UVA are unable to make meaningful informed decisions. Genetically Modified foods have a valuable role to play in the fight against world hunger and food insecurity, but they must come with warnings and transparency––people have a right to know. 

Sources: 

1. “Agricultural Biotechnology Glossary.” USDA, https://www.usda.gov/topics/biotechnology/biotechnology-glossary. 

2. “Genetically Modified Organisms.” National Geographic Society, https://education.nationalgeographic.org/resource/genetically-modified-organisms. 

3. “Key Statistics & Graphics.” USDA ERS - Key Statistics & Graphics, https://www.ers.usda.gov/topics/food-nutrition-assistance/food-security-in-the-u-s/key-statistics-graphics/. 

4. SITNFlash. “Will Gmos Hurt My Body? the Public's Concerns and How Scientists Have Addressed Them.” Science in the News, 17 Jan. 2021, https://sitn.hms.harvard.edu/flash/2015/will-gmos-hurt-my-body/#:~:text=One%20specific%20concern%20is%20the,organ%20damage%2C%20or%20gene%20transfer 

5. Graber, Eric. “Food as Medicine.” American Society for Nutrition, 24 Feb. 2022, https://nutrition.org/food-as-medicine/ 

6. Keatley, K L. “Controversy over genetically modified organisms: the governing laws and regulations.” Quality assurance (San Diego, Calif.) vol. 8,1 (2000): 33-6. doi:10.1080/105294100753209174 

7. Davies, Benjamin. “Responsibility and the limits of patient choice.” Bioethics vol. 34,5 (2020): 459-466. doi:10.1111/bioe.12693 

8. “What We Are Doing On Grounds.” UVA Dine, https://virginia.campusdish.com/en/Sustainability/WhatWeAreDoing#:~:text=When%20local%20items%20are%20used,ingredients%20to%20our%20dining%20locations.

9. https://4pfoods.com/posts/what-do-all-those-labels-stand-for/#:~:text=At%204P%20Foods%20we%20get,%2C%20antibiotics%2C%20chemicals%20or%20vaccines

10.  “Read Food Labels like A pro: What You Need to Know.” 4P Foods, https://4pfoods.com/posts/what-do-all-those-labels-stand-for/#:~:text=At%204P%20Foods%20we%20get,%2C%20antibiotics%2C%20chemicals%20or%20vaccines.  

11. “Cavalier Produce.” Cavalier Produce, https://www.cavalierproduce.com/.  

12. McEvoy, Posted by Miles. “Organic 101: Can Gmos Be Used in Organic Products?” USDA, 21 Feb. 2017, https://www.usda.gov/media/blog/2013/05/17/organic-101-can-gmos-be-used-organic-products#:~:text=The%20use%20of%20genetic%20engineering,t%20use%20any%20GMO%20ingredients.  

The Ethics Behind Breastfeeding Promotion

Often when a baby is born, society tends to gloss over the struggles that come with raising a child and focus on the joy that is a new life. Parents must decide how to feed their child, whether it be through breastfeeding, infant formula, or a combination of both. Health providers advocate for breastfeeding; however, many parents opt-out from this advice. Through various methods of breastfeeding promotion, healthcare providers are hoping to increase the number of people who choose to breastfeed – but what is the best way to achieve this goal? New York City launched a health initiative called “Latch on NYC,” aimed at promoting breastfeeding and lessening infant formula usage [1]. Although the goal of this initiative was to benefit the health of infants, it has many ethical issues. In this article, I will explore the ethics behind breastfeeding promotion including promoting shame and limiting autonomy, focusing on “Latch on NYC”. 

Before discussing breastfeeding promotion, it is important to understand why breastfeeding is a highly suggested method of infant feeding. According to the CDC, it is recommended that infants are exclusively breastfed for six months [2]. This allows the infant to gain the maximum amount of nutrients for a healthier life. When a parent breastfeeds, antibodies are also passed to the baby, strengthening their immune system to combat harmful bacteria. Moreover, breastfeeding provides generous health benefits that include a lower risk for infections, allergies, diseases, and infant mortality. Mothers who breastfeed are also benefited, as they are at a lower risk for certain cancers, cardiovascular disease, postpartum depression, and type 2 diabetes [3]. 

With benefits like these, it may sound like breastfeeding is the obvious option to choose when feeding an infant – but breastfeeding is not as easy as it sounds. Breastfeeding is a longtime commitment that requires the breastfeeding parent to consistently be able to breastfeed when needed or pump breast milk. Many parents find this difficult to maintain while also focusing on their professional life, as some professions do not encourage breastfeeding while on the job. Apart from lifestyle changes, breastfeeding can also be a physical toll. Swollen breasts and bruised nipples can make breastfeeding very difficult, influencing many parents to switch to formula [4]. The lack of consistency with breastfeeding is apparent in the CDC’s 2022 Breastfeeding Report Card, which reported that over the span of six months, breastfeeding rates have dropped from 83.2% to 55.8% [2]. This stark drop in breastfeeding motivates healthcare professionals to find ways to promote it until the optimal six months, but not all of their promotional efforts account for ethical complications. 

In 2012, the New York City Health Department launched an initiative called “Latch on NYC” to promote breastfeeding amongst new parents. NYC’s health commissioner at the time, Thomas Farley, aimed to “limit the promotion of infant formula in their facilities” because it would encourage new parents to prioritize breastfeeding [1]. When a hospital signs onto the “Latch On NYC” initiative, it is agreeing to the following: only supplementing infant formula for medical reasons, restricting staff access to formula, tracking the distribution of formula and reporting it to the health department, discontinuing free infant formula, and prohibiting materials that promote formula feeding [5]. At first glance, “Latch on NYC” appeared as an extreme way to ensure an increase in breastfeeding; however, the New York government failed to make it clear that formula was still accessible. When assessing the ethicality of “Latch on NYC”, I would argue that it is ethical to promote a practice that benefits the most vulnerable population, infants. However, “Latch on NYC” implements unethical tactics to encourage parents to breastfeed and violates the autonomy of a breastfeeding parent, making it an overall unethical approach to breastfeeding promotion. 

“Latch on NYC” unethically promotes breastfeeding by fostering an environment of shame and guilt. Choosing to breastfeed is a private choice within a family, and “Latch on NYC” does not acknowledge the different factors that lead families to choosing infant formula. Promoting breastfeeding and criticizing infant formula can be damaging to families because it suggests that one method of feeding an infant is correct, while the other is not. Both methods of feeding an infant are safe and widely practiced; however, by suggesting that one method is better than the other, “Latch on NYC” implies that a parent who chooses infant formula over breastfeeding is not a “good” parent. Many parents are unable to physiologically breastfeed, while others face social and economic barriers that make breastfeeding difficult. Exposure to health promotion that engrains the “breast is best” message into one’s mind can lead to parents feeling like they are to blame if breastfeeding is a challenge in their lives. 

There are many factors that present challenges with maintaining consistent breastfeeding, such as socioeconomic status and family dynamics. It is difficult for a breastfeeding parent to feed for the recommended duration because many families rely on both parents’ income, and breastfeeding is a long-term commitment that does not allow for any breaks . The United States’ limited maternity leave allowances results in many parents having to return to work earlier than desired so they can support their families. In a 2012 study, it was found that there are “sharper income drops in mothers who breast-fed for six months or longer, as compared to mothers who breast-fed for less than six months or formula fed” [5]. It is ironic how health departments praise the benefits of breastfeeding and encourage the practice heavily, but neglect to campaign for proper parental leave. In addition, many families have dynamics that largely impact the course of breastfeeding. Since one parent breastfeeds, there is an asymmetry with the amount of time each parent spends with the infant. A 2011 study on heterosexual relationships found that “fathers of breast-fed infants were less involved in a range of infant care practices as compared to fathers of formula-fed infants” [5]. Many parents value having independent relationships with their child, which motivates them to not exclusively breastfeed. Breastfeeding is also an exhausting task, and the breastfeeding parent may want a break, which is something the non-breastfeeding parent can provide with formula. “Latch on NYC” neglects to recognize these circumstances that many people face. By enforcing strict measures to promote breastfeeding, “Latch on NYC” puts parents in a position to feel guilty about returning to work or shameful for feeling tired or being unable to breastfeed. In an article written by Anne Barnhill and Stephanie Morain, they state that “it is inappropriate for breast-feeding promotion intentionally to make women feel guilty or ashamed for not breast-feeding, given that not breast-feeding is the right choice for some families” [4]. The “Latch on NYC” initiative is unethical because it enforces ideologies that corner parents into breastfeeding and limits their autonomy in choice. 

“Latch on NYC” presents more unethical problems as a result of limiting parental autonomy. In healthcare, it is crucial to have full autonomy when making decisions regarding one’s body. While “Latch on NYC” does not completely violate one’s autonomy, it does limit it to a large extent. “Latch on NYC” is not as transparent as possible with communicating their policies and the choices breastfeeding parents have. In an effort to increase breastfeeding rates, “Latch on NYC’s” method of removing infant formula from hospitals gives off the impression that infant formula is prohibited from new parents. However, the initiative does not make it clear that new parents are able to request formula from hospital staff if needed. Although there is the possibility that a new parent could have read about “Latch on NYC’s” policies, it is unlikely that the average citizen is highly educated on the specifics of it. If hospitals are not offering infant formula to new parents, then how are these parents supposed to know they can ask for some? The lack of transparency within this health initiative decreases one’s autonomy because they are not aware of the choices they have. This can make parents feel forced to make a certain decision, despite being unhappy with it. “Latch on NYC” and the New York government worked together to address some of the myths associated with the initiative and its threat to autonomy but this does not excuse the dishonesty within the program itself [6]. It is unethical to have hospital staff withhold potentially beneficial information from a patient with the hopes the patient asks themselves. 

Despite the unethical practices of the “Latch on NYC” initiative, breastfeeding promotion is necessary. Increasing breastfeeding promotion efforts is a great idea; however, not at the price of autonomy and inconveniencing parents who rely on infant formula to a certain extent. Society also needs to provide better support resources like guaranteed paid maternity/paternity leave. In addition, it is important to acknowledge that although breastfeeding has valuable health benefits, it may not be the best option for every family. The power of being able to choose which method of infant feeding is best is something breastfeeding promotion needs to prioritize. 

Work Cited

1. New York City Health Department launches "Latch on NYC" initiative to Support Breastfeeding Mothers. NYC Health + Hospitals. (2012, May 9). Retrieved February 28, 2023, from https://www.nychealthandhospitals.org/pressrelease/new-york-city-health-department-launches-latch-on-n yc-initiative-to-support-breastfeeding-mothers/ 

2. Centers for Disease Control and Prevention. (2022, August 31). Breastfeeding report card. Centers for Disease Control and Prevention. Retrieved February 28, 2023, from 

https://www.cdc.gov/breastfeeding/data/reportcard.htm 

3. Benefits of breastfeeding for you & baby. Cleveland Clinic. (n.d.). Retrieved February 28, 2023, from https://my.clevelandclinic.org/health/articles/15274-benefits-of-breastfeeding

4. Barnhill, A., & Morain, S.R. (2015). Latch On or Back Off?: Public Health, Choice, and the Ethics of Breast-Feeding Promotion Campaigns. IJFAB: International Journal of Feminist Approaches to Bioethics 8(2), 139-171. https://www.muse.jhu.edu/article/592298. 

5. Rippeyoung, P., & Noonan, M. (2012). Is Breastfeeding Truly Cost Free? Income Consequences of Breastfeeding for Women. American Sociological Review, 77(2), 244-267. 

6. Latch on NYC initiative myths & facts - government of New York City. (n.d.). Retrieved February 28, 2023, from https://www.nyc.gov/html/om/pdf/2012/latch_myth_fact.pdf

An Examination of the Ethics of FDA Blood Supply Regulation

Since 1983, blood donations from men who have sex with men (MSM) have been strictly regulated by the FDA. Federal regulations against MSM donation began amid the AIDS pandemic as the government tried to prevent contamination of the blood supply. As MSM were identified as a major demographic suffering from HIV/AIDS, they were given a “lifetime ban”, permanently prohibiting any man who had ever had sex with another man from donating.  After decades of protest, the policy was decreased to a twelve-month deferral period in 2014, and a three-month deferral period in 2020. [1,2] This policy has faced continuous criticism for its lack of addressing individual risk levels and restricting blood donation based on sexual orientation. While there is reasoning behind these decrees, there are much more effective alternatives for regulation and protection of the United States blood supply that are less discriminatory and do not group all MSM into one risk category. 

Blood donation is, in principle, not an individual right. It is within the government’s power to limit or allow blood donation under any criteria they choose. The current FDA policy states that all MSM are ineligible to donate within three months of having sex with another man. The object of this policy is to prevent contamination of the blood supply, as testing for HIV in blood samples is never 100 percent accurate. As HIV transmission still tends to be higher among MSM, accounting for 68% of cases, they are the most strictly regulated demographic—although heterosexual sexual contact still accounts for 22% of cases, according to the CDC. [3]

Restrictions on MSM blood donation and testing of donated blood samples have not eliminated HIV in the blood supply in the past. According to the Human Rights Campaign, “Despite current restrictions and testing of approximately 12 million units donated each year, 10 HIV-infected units have slipped through.” [2] While this means that the current restrictions do not fully eliminate HIV, it also shows that error is possible with blood testing and that keeping the blood supply uncontaminated is still of great importance. 

Placing all MSM into one risk group doesn’t account for different factors that affect their chance of having HIV. “Some have argued that those in monogamous relationships, MSM who always wear condoms, and those on pre-exposure prophylaxis (PrEP) have a much lower transmission rate of HIV than the general MSM population – or other groups that are currently allowed to donate – and thus should be allowed to donate.” [1] Perhaps all individuals should be individually assessed for their HIV risk, regardless of whether they are MSM or not. “A man who has had protected oral sex with another man once in the 3 months [is] currently barred from donating blood. Yet a woman who has had unprotected sex with multiple partners over the same time frame with no knowledge of their personal histories remains in the donor pool.” [2]

There are other options to protect the US blood supply while doing so in an ethical and non-discriminatory manner. Individual risk assessment prior to donation, as mentioned before, is an option. This could include identifying whether one has knowledge of previous partner(s)’ HIV status, how many partners they have had in the recent past, the type of sexual encounter it was (oral, anal, vaginal, etc.), and whether they are in a long-term closed relationship with a partner(s). Additionally, nucleic acid tests (NATs) can detect HIV in an individual within a 10 to 33 day window. [4] By testing the donors a second time after this window has passed, HIV-positive samples could be more consistently caught.

The Red Cross and the Human Rights Campaign (HRC) both agree that the policy regarding blood donation should be changed by the FDA. Both organizations support an individual risk assessment questionnaire as the best course of action. [2,5] Due to pressure from these organizations, the public, and other advocacy groups, the FDA has recently proposed an initial draft of new blood supply regulations that would remove the time deferral for MSM. It would, as suggested, use individual risk assessment to decide whether to allow or deny a donor. The survey will ask about recent sexual history, and those who report having anal sex with new or multiple partners within the past three months will be deferred from donation. This proposed referendum was released on January 27, 2023. It became open to public comment on January 30th and will remain open until March 31st. [6,7]

Balancing public health concerns and individual rights is a major ethical challenge. However, outrage during the aftermath of events such as the Pulse Nightclub shooting—where members of the LGBTQ+ community were prohibited from donating blood to the victims—reminds us that blood donation is an important, life-saving act that members of our greater community depend on. The ability to aid one’s neighbors in times of crisis should be made as accessible as is safely possible to promote a healthier, cooperative society. 

References:

1: Arora, K. S. (2017). Righting anachronistic exclusions: The ethics of blood donation by men who have sex with men. Journal of Gay and Lesbian Social Services, 29(1), 87–90. https://doi.org/10.1080/10538720.2016.1261385

2: Blood Donations and the LGBTQ Community. (n.d.). Human Rights Campaign. https://www.hrc.org/resources/blood-donations

3: Basic Statistics | HIV Basics | HIV/AIDS | CDC. (n.d.). https://www.cdc.gov/hiv/basics/statistics.html

4: Understanding the HIV Window Period | Testing | HIV Basics | HIV/AIDS | CDC. (n.d.). https://www.cdc.gov/hiv/basics/hiv-testing/hiv-window-period.html#:~:text=An%20antigen%2Fantibody%20lab%20test,to%2033%20days%20after%20exposure

5: LGBTQ Donors. (n.d.). https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements/lgbtq-donors.html

6: U.S. Food and Drug Administration. (2023, January 27). FDA Proposes Individual Risk Assessment for Blood Donations, While Continuing to Safeguard U.S. Blood Supply. U.S. Food And Drug Administration. https://www.fda.gov/news-events/press-announcements/fda-proposes-individual-risk-assessment-blood-donations-while-continuing-safeguard-us-blood-supply

7: Regulations.gov. (n.d.). https://www.regulations.gov/document/FDA-2015-D-1211-0152

Death to the Dead Donor Rule? The Ethical Implications & Limitations of the DDR

The Dead Donor Rule (DDR) is an ethical guideline that requires that organ donors be pronounced dead before the removal of any organs may occur. The DDR is meant to protect donors from potential exploitation by ensuring that the removal of organs does not cause the donor’s death. Proponents of the DDR also claim that the DDR ensures public trust in the transplant system while also acting as a safeguard for the most foundational medical doctrine, to do no harm [1]. In 1980, the DDR was codified into law by the Uniform Definition of Death Act (UDDA), which recognizes both neurological and cardiological conditions as methods to determine death and has since been adopted by all 50 states [2]. 

Recently, some ethicists and medical professionals have begun advocating to have the DDR removed as the standard for organ transplant policy. Opponents to the DDR argue that the DDR employs faulty medical standards to define death, limiting the pool of transplantable organs and impeding upon the patient's last wish to become a donor. The faulty medical standards in the DDR also create a paradox where a patient may be declared dead in one state, but alive in another further confusing loved ones during a stressful and difficult time.

Opponents to the DDR claim that, under the current criteria to declare a donor’s death, we have been using patients that are not truly dead to perform transplants. However, these opponents argue that retrieving organs from someone who is declared dead by neurological or cardiological conditions is still ethical, but not because the patient is “dead.”  Dr. Truog, practitioner of pediatric intensive care and a Director at the Harvard Center for Bioethics says, “although it may be ethical to remove vital organs from these patients, [those pronounced dead on the basis of neurologic or cardiac conditions], we believe that the reason it is ethical cannot convincingly be that the donors are dead” [3]. 

Determining the time of the donor’s death is often done on the basis of neurological conditions, commonly understood as brain death. A person who is considered brain dead, also known as brain stem death, has “irreversible cessation of all functions of the entire brain, including the brain stem” [4]. The reasoning behind this definition of death is that “since death is the breakdown of the organism as a whole, and the functioning of the brain is necessary for the integration of the various cells, tissues, and organs into a single organism—total brain death is the death of the human being” [5].

The diagnosis of brain death resulted from the development of modern critical care medicine. Before modern critical care medicine, death was determined when a heart beat could no longer be detected [6]. Since the brainstem controls most automatic body functions, like your heartbeat, a lack of brain stem function means that the patient will require ventilation, along with other mechanical support, to prevent total organ failure. While modern machinery may keep the patient’s organ’s alive, brain death is irreversible and the patient is considered legally dead after brain death is determined [7]. It is important to note that brain death is different from a coma or vegetative state, both of which a patient may recover from [6].

The determination of brain death is not made lightly or quickly by doctors. Doctors first do tests to ensure that the observed symptoms are not being caused by other factors, such as hypothermia or an underactive thyroid gland. If these things are ruled out, then doctors begin tests to determine if brain stem death has occurred. The tests are repeated twice at different time intervals and no doctors involved in the tests can also be a part of the transplant team [7]. If the patient does not respond to any of the tests, then a diagnosis of brain death is made. 

While this criteria may appear medically and ethically sound, opponents to the DDR have noted that “brain dead” patients’ brain stems often retain the ability to regulate homeostatic functions, such as temperature control or hormone secretion, suggesting that not all brain function has been lost [8]. To counter, some doctors argue that complete and total brain function does not need to be lost for a patient to be declared dead. As long as brain functions essential to maintaining the integration of body functions are absent, then the patient should be pronounced dead since there is a limit to how long their physical body can be supported on life support, although that limit may be several years.

The other method for determining death is circulatory conditions. Donation after cardiac death (DCD) occurs when a patient “has suffered devastating and irreversible brain injury and may be near death, but does not meet formal brain death criteria” [9]. In this situation, family members or medical proxy consent to have the patient be taken off life support allowing a “natural death” to occur [9]. When the heart stops beating, which can take a few minutes to over an hour, the physician observes the patient to ensure autoresuscitation does not occur. If circulation does not return, then the patient is pronounced dead and the transplant team begins organ removal [8]. Due to the lack of circulation, this method may make organs slow to start or non-viable for transplantation.

Opponents to the DDR have noted another flaw in the DDR’s criteria for death. For death by cardiac conditions, the irreversible cessation of cardiac function is necessary to pronounce death. If that is the case, then how is it possible that medical professionals are able to successfully transplant a heart used to pronounce one patient dead into the chest of another? Ethicists and advocates for death by cardiac conditions argue that this approach is ethical and that these patients can be declared dead because consent has been given to not resuscitate them [3].

The flaws observed in the DDR’s definition of neurological and cardiological conditions for death suggest that we have been using patients that are still alive to perform transplants. While this may feel creepy and raise concerns about donor rights violations, the flaws within the DDR open up the possibility for a new system of organ procurement that relies on gaining patient consent to withdraw life support and harvest organs. Proponents of the DDR can argue that these flaws suggest that these patients are severely disabled and their lives must be protected; however, obtaining patient consent is already incorporated into the DDR under its criteria for death by cardiological conditions. Dr. Truog echoes this sentiment advising medical professionals to instead “emphasize the importance of obtaining valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury” [3]. With a different legal and ethical standard, he believes vulnerable patients can still be kept safe and doctors could still allow “people to die in the way they want to die while still being able to fulfill their request to donate” [7].

While there are several underlying concerns that have led medical professionals to question the ethicality and medical accuracy of the DDR. The central concern, though, is that, not only is our legal and medical definition of death wrong, but that we created an inaccurate definition of death that hinders the successful procurement of vital organs for transplant. Caution should be taken, though, in making the argument that the DDR needs to be updated simply because we cannot gain access to as many viable organs for transplantation. While it is important to consider how we can help the most people, that desire alone is not a viable medical or ethical argument that justifies revising the DDR. 

Perhaps the most central issue to consider, though, when evaluating the DDR, is under what conditions do we consider there to be life and under what conditions do we consider life to be worth living. Whatever the next steps may be, it will take time to shift policy and medical consensus, which may give scientists enough time to invent other methods to obtain and replace organs.

Citation:

1. Dutchen, S. (n.d.). A fine line: Is it time to reconsider the dead-donor rule? Harvard Medicine. Retrieved February 19, 2023, from https://hms.harvard.edu/magazine/ethics/fine-line

2. Schweikart, S. J. (2020). Reexamining the flawed legal basis of the “Dead Donor Rule” as a foundation for organ donation policy. AMA Journal of Ethics, 22(12). https://doi.org/10.1001/amajethics.2020.1019 

3. Truog, R. D., & Miller, F. G. (2008). The dead donor rule and organ transplantation. The Social Medicine Reader, Volume I, Third Edition, 359(7), 259–262. https://doi.org/10.1215/9781478004356-039

4. Nikas, N. T., Bordlee, D. C., & Moreira, M. (2016). Determination of Death and the Dead Donor Rule: A Survey of the Current Law on Brain Death. The Journal of medicine and philosophy, 41(3), 237–256. https://doi.org/10.1093/jmp/jhw002

5. Lee, P. (2015, January 15). Total brain death is a valid criterion of death. Ethika Politika. Retrieved February 19, 2023, from https://www.ethikapolitika.org/2015/01/15/total-brain-death-valid-criterion-death

6. Nitkin, K. (2017, November 7). The challenges of defining and diagnosing brain death. John Hopkins Medicine. from https://www.hopkinsmedicine.org/news/articles/the-challenges-of-defining-and-diagnosing-brain-death

7. Overview of Brain Death. NHS . (n.d.). from https://www.nhs.uk/conditions/brain-death/

8. Sade R. M. (2011). Brain death, cardiac death, and the dead donor rule. Journal of the South Carolina Medical Association (1975), 107(4), 146–149.

9. Transplant Center. (n.d.). Donation after cardiac death (DCD). UC Davis Health. Retrieved February 17, 2023, from https://health.ucdavis.edu/transplant/nonlivingdonors/donation-after-cardiac-death.html

Retina-Specialized Clinical Care: Ethics of Sustainment

This Winter Break, I worked for a Vitreoretinal Surgeon in Charleston, South Carolina as an Ophthalmic Technician, trained on taking Visual Acuity Exams, Optical Coherence Tomagraphs (OCTs), Fundoscopic Examinations (Fundus), and Fluorescein Angiographs (FA). The patient population that I worked with had significantly high levels of diabetes, a disease that requires constant and ongoing medical care to sustain many physiological functions, in this case, sight. Before I begin, I want to provide a disclaimer that I am not an expert in Diabetes or any of the conditions discussed and have explained these conditions to the best of my ability. Furthermore, the context on these diseases will provide background for the argument that I am going to make concerning the ethics of sustainment, a phrase that I have coined referring to the ethical implications of continuing to provide medical care when non-life-threatening conditions are being stabilized or sustained, without hope of improvement.

Diabetes is one of the least understood, most stigmatized, and pervasive diseases present in our society today. The reality is that 34.6 million Americans are living with diabetes, but only 28.7 million people of all ages––8.7% of the population––are diagnosed with either Type I or Type II [1]. According to the Centers for Disease Control, “for both men and women, prevalence of diagnosed diabetes was highest among American Indians and Alaska Natives (14.5%), followed by non-Hispanic Blacks (12.1%), people of Hispanic origin (11.8%), non-Hispanic Asians (9.5%) and non-Hispanic Whites (7.4%)” [1]. Type I Diabetes is an autoimmune disease in which the immune system of a patient who presents with Type I attacks the beta-cells of the pancreas and the patient’s pancreas stops producing insulin, therefore this type of diabetes is called Insulin-Dependent Diabetes [2]. Typically patients with Type I Diabetes will be diagnosed earlier in childhood. This disease has a genetic component, but it does not occur from birth. It is believed that there is a viral origin that causes Type I Diabetes [3]. Type II Diabetes is the form of diabetes that is closely associated with obesity and weight with the majority of people with diabetes, roughly 90%, having Type II Diabetes [4]. Type II Diabetes occurs when patients cannot produce enough insulin to regulate the sugar (glucose) present in their blood or when patients have issues with insulin’s cellular function, as it does not adequately stimulate glucose uptake. 

In the patients that I worked with at Charleston Retina Consultants, I observed the clinical manifestation of diabetes, as well as its prevalence and lack of regulation. As part of the screening process, I had to intake patients and ask them what their blood sugar was and only one out of ten of them would know their hemoglobin A1C, which “measures your average blood sugar levels over the past 3 months.” Hemoglobin A1C is a common way to test and diagnose prediabetes and diabetes. For diabetics, blood sugar must be closely regulated because if it is too high or too low there could be serious clinical complications, including nephropathy, neuropathy, retinopathy, cardiovascular issues, diabetic coma, diabetic ketoacidosis, and so on [6]. The condition that we were treating through vitreoretinal injections was retinopathy, which manifests clinically in different forms. 

I saw this first-hand when I performed Optical Coherence Tomagraphs on patients, which is a scan of a cross-section of the retina, which allows ophthalmologists to measure the thickness and help with diagnosing retinal diseases [7]. I could see Diabetic Macular Edema––the most common cause of retinal complications that we treated––in the abnormal swelling in the macula that can affect the fovea on the scans that I was taking [8]. Of the patients we saw in a day experiencing retinal complications, a high percentage of them had diabetes. The disease causes abnormal blood vessel growth in the retina leading to vision impairment. This lifelong struggle leads to constant doctor’s appointments, where patients are poked, prodded, injected, and moved in and out of doctors' offices is, to put it lightly, not fun. For patients, they dread the doctors' office because it seems to be a place filled solely with negatives––bad news, suggestions to change lifestyle, fatphobia, and unpleasant experiences. 

In my experience, I would prepare patients for injections which they had been receiving monthly for years. These patients would be on their fortieth, sixtieth, and seventy-eighth injection, which involves them coming into clinic and getting their eyes dilated, numbed, repeatedly examined with bright lights, and then numbed again with lidocaine, followed by injections which can be painful upon injection, as well as cause pain in patients for the next couple of days. Furthermore, each of these visits prevent patients from being able to go to work, take care of their children, and provide a constant burden upon them. In many of these situations, these injections improve vision significantly and patients will stop injections once their conditions, whether macular edema or another retinal condition, however, the ethical scenario of sustainment applies to patients who receive injections to preserve vision without the hope of significant improvement [10]. 

This preservation or sustainment as opposed to improvement places this form of treatment in a category which is separate and distinct from care which improves conditions. To place this in the traditional principles of ethical and clinical categories of beneficence, nonmaleficence, autonomy, and justice [11]. The ethical scenario in this situation is one of beneficence––does the patient benefit enough from the maintenance of vision as opposed to the financial and physical toll of receiving indefinite monthly injections? This scenario highlights the importance of considering that health may not be the only factor that should be considered when providing care to patients. Furthermore, in this situation, patients have received injections for such an extended period without hope of improvement, yet still have vision that can be classified as significantly impaired. 

This is where I believe the ethics of sustainment should be applied in clinical practice that we should consider care to sustain a non-life threatening condition, such as macular edema, in a different bioethical context. Sustainment should be defined as treatment or elective procedures that are maintaining current conditions without the likelihood of significant improvement. For instance, a patient who has received sixty injections to preserve already sub-optimal vision to prevent blindness. Sustaining this condition is not only expensive but incredibly stressful as patients must attend appointments on a monthly basis which prevents them from earning income and pursuing other opportunities. 

I got to chat with one patient about the trip she planned to go to Australia. I shared with her my love of kangaroos and excitement for her to experience all that Australia had to offer. As we chatted, she opened up to me about this being her last “hoorah” so to speak––that she and her husband were both terminally ill and their life was short. I expressed my sympathy, and wished her the best on her trip––I talked about how important I thought it could be for her to spend the time she had left living life to its fullest. This patient was terminally ill and receiving painful and taxing injections to preserve her vision in the last years of her life. 

This is the prime ethical scenario in which I believe that the ethics of sustainment must be applied, a patient who has no hope of improved vision and suffers other conditions or circumstances which complicate treatment, should have their care decided in a separate field of consideration. I believe that when you are sustaining and not improving in specific non-life threatening situations that it is incumbent upon providers to prioritize the wellbeing of the patient, which may not always be a biological or physiological improvement. Therefore, in a situation of sustainment, you need to consider multiple factors including financial and personal well-being. This concept applies neither to life-saving or highly-likelihood of improvement procedures, only procedures that sustain a condition. The notion of considering the ethics of sustainment is a piece that clinical bioethics doesn’t concentrate on as it's largely concerned with life-or-death situations. However, a significant amount of clinical care doesn’t fall into this category and thus, other ways of thinking such as this must be explored and considered in greater depth. 

Sources: 

1. Centers for Disease Control and Prevention. (2022, September 30). Prevalence of diagnosed diabetes. Centers for Disease Control and Prevention. Retrieved January 20, 2023, from https://www.cdc.gov/diabetes/data/statistics-report/diagnosed-diabetes.html 

2. Mayo Foundation for Medical Education and Research. (2022, July 7). Type 1 diabetes. Mayo Clinic. Retrieved January 20, 2023, from https://www.mayoclinic.org/diseases-conditions/type-1-diabetes/symptoms-causes/syc-20353011 

3. Filippi, C. M., & von Herrath, M. G. (2008). Viral trigger for type 1 diabetes: pros and cons. Diabetes, 57(11), 2863–2871. https://doi.org/10.2337/db07-1023

4. Mayo Foundation for Medical Education and Research. (2022, November 19). Type 2 diabetes. Mayo Clinic. Retrieved January 20, 2023, from https://www.mayoclinic.org/diseases-conditions/type-2-diabetes/symptoms-causes/syc-20351193 

5. Centers for Disease Control and Prevention. (2022, September 30). All about your A1C. Centers for Disease Control and Prevention. Retrieved January 20, 2023, from https://www.cdc.gov/diabetes/managing/managing-blood-sugar/a1c.html 

6. Mayo Foundation for Medical Education and Research. (2022, August 11). Diabetic coma. Mayo Clinic. Retrieved January 20, 2023, from https://www.mayoclinic.org/diseases-conditions/diabetic-coma/symptoms-causes/syc-20371475#:~:text=Blood%20sugar%20that's%20either%20too,toxic%20acids%20known%20as%20ketones. 

7. Turbert, D. (2022, May 26). What is optical coherence tomography? American Academy of Ophthalmology. Retrieved January 20, 2023, from https://www.aao.org/eye-health/treatments/what-is-optical-coherence-tomography 

8. Diabetic macular edema (DME). Prevent Blindness. (2022, October 12). Retrieved January 20, 2023, from https://preventblindness.org/diabetic-macular-edema-dme/ 

9. The American Society of Retina Specialists. (n.d.). Intravitreal injections. Intravitreal Injections - Patients - The American Society of Retina Specialists. Retrieved January 20, 2023, from https://www.asrs.org/patients/retinal-diseases/33/intravitreal-injections 

10. Nizawa, T., Kitahashi, M., Baba, T., Iwase, T., Kubota-Taniai, M., Hattori, Y., Shiko, Y., Kawasaki, Y., Iwase, T., Sato, T., Ogawa, S., Sugawara, T., & Yamamoto, S. (2021). Improvements of Retinal Sensitivity after Intravitreal Injection of Aflibercept in Eyes with Neovascular Age-Related Macular Degeneration with or without Polypoidal Choroidal Vasculopathy. Ophthalmologica. Journal international d'ophtalmologie. International journal of ophthalmology. Zeitschrift fur Augenheilkunde, 244(4), 347–360. https://doi.org/10.1159/000517187

11. Varkey B. (2021). Principles of Clinical Ethics and Their Application to Practice. Medical principles and practice : international journal of the Kuwait University, Health Science Centre, 30(1), 17–28. https://doi.org/10.1159/000509119

Physician Assisted Suicide: A Good Death Should Not Eclipse a Good Life

What comes to your mind when you think of death? While death is an uncomfortable subject to ponder, it is one of our few unavoidable certainties. Due to modern technological advances, there has been an overall increase in the life expectancy of the general population. However, the incidence of terminal diseases such as cancer also increases with age. Patients and their loved ones, in turn, must face difficult but necessary conversations deciding how to cope with death. This process is often unpredictable, scary, and painful. Physician assisted suicide (PAS), also referred to as physician-assisted dying or euthanasia, has been fiercely debated in the U.S. over the past few decades as a way to control our deaths. PAS must have strict legal safeguards for the practice to be truly effective at putting patients’ well-being in life first.

Before examining the implications of PAS policy on human life and death, it is important to define its definition and history. According to professors at the University of Pennsylvania’s Department of Medical Ethics and Health Policy, PAS is defined as when physicians intentionally administer “medications or other interventions to cause the patient's death with the patient's informed consent” [1]. Medical professionals are in wide consensus that involuntary and nonvoluntary PAS are unethical as they end the life of the patient without their informed consent — a doctrine that protects patients’ right to their own body [2]. As such, they should not be the subject of this debate. Voluntary PAS on the other hand has been slowly gaining support from different countries around the world, from Switzerland’s legalization of the practice in 1942 to most recent approval in Canada, New Zealand, and Australia. In the United States, PAS is authorized in 10 states and 1 district, including but not limited to Oregon, Maine, and Washington D.C. Therefore, the growing legalization of PAS warrants serious discussion on how it should be applied in medical settings. 

Legalizing PAS helps some patients to regain autonomy and dignity in death. In deciding exactly how and when they will die, it creates a space for mourning that would not otherwise be there if the patient was either unconscious in critical life support, or suffered a sudden death. In one example, Avivah Wittenberg-Cox recalled that her mother used Canada’s Medical Assistance in Dying (MAID) program to end her life [3]. She believed this decision empowered her mother to live as an “essentially whole person, brave, realistic, [and] facing the truth of life and inevitable death.” Using MAID, her mother was able to pass away with family by her side in her own home instead of the hospital. For the mentally capable, terminally ill patients in particular, choosing PAS may relieve their suffering by owning autonomy and coming to terms with death. PAS holds the key to a meaningful death for some patients.

We must not, however, forget that the implication of PAS is death. Strict legal safeguards must be enforced to prevent the unethical use of this practice. Patients experiencing immense physical and mental suffering should not choose PAS as their only or first option of relief. Instead, after assessing the patients’ unique circumstances, physicians should consider PAS alongside other end-of-life care options that provide progress and hope towards a better life. For instance, palliative care, medical services geared at optimizing a patients’ quality of time regardless of if they have a terminal illness or not, can actually increase one’s lifespan despite physician prognoses [4]. Other options that should be considered are psychiatric evaluations or home healthcare services. Overall, physicians can continue to serve as stewards of autonomy and dignity in their own institutions to make a holistic assessment on their patients’ needs, instead of turning to death immediately.

Without strict legal safeguards on PAS, institutions put forth the idea of planned death as the first course of action, indirectly suggesting that there are no other means of salvation for those with intense suffering or terminal illness. The physician-patient relationship uniquely positions physicians to take initiative in introducing interventions for issues such as mental health, poverty, lack of housing, and extreme loneliness. Therefore, when there is a combination of vulnerability, trust, knowledge, and confidentiality, the physician-patient relationship creates a safe space for patients to disclose their concerns [5]. Such non-terminal reasons, nonetheless, have been cited in real life as reasons for PAS. If patients are turning to PAS because of unbearable mental and social burdens, then we as a society have failed to implement preventative care. Surgeon and writer Atul Gawande puts it best in his book, Being Moral: “Our ultimate goal, after all, is not a good death but a good life to the very end” [6]. Therefore, healthcare systems must focus more on improving inadequate treatment of symptoms to prevent the unnecessary end-of-life suffering that justifies PAS.

Death may seem far away enough to feel irrelevant for some of us. Yet, with more choices on how to spend our last moments, we should embrace the debate on which will be the most empowering and meaningful for ourselves. Every new end-of-life policy brings a way we could possibly close the chapters of our life. Healthcare providers, leaders, and policymakers should encourage patients to consider other treatment options to help promote a better life first rather than risk hurrying an avoidable death. Ultimately, when the inevitable comes, planned or not, we can face it as the whole person we know ourselves to be. 

References: 

1. Emanuel, E. J., & Joffe, S. (2003). Assisted suicide and euthanasia, Holland-Frei cancer medicine (6th ed.), BC Decker. 

2. Paterick, T. J., Carson, G. V., & Allen, M. C. (2008). Medical informed consent: General considerations for physicians. Mayo Clinic proceedings, 83(3), 313-319. https://doi.org/10.4065/83.3.313

3. Wittenberg-Cox, A. (2022). A designed death – where & when the world allows it. Forbes. 

4. Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A., & Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England journal of medicine, 363(8), 733–742. https://doi.org/10.1056/NEJMoa1000678

5. Chipidza, F. E., Wallwork, R. S., & Stern, T. A. (2015). Impact of the doctor-patient relationship. The primary care companion for CNS disorders, 17(5), https://doi.org/10.4088/PCC.15f01840

6. Fink, S. (2014). Atul Gawande’s ‘Being Mortal.’ The New York Times. 

MORAL STATUS IN CEREBRAL ORGANOIDS, GATRULOIDS, AND CHIMERAS

The development of stem cell technology in recent years has transformed biomedical research and clinical care with the introduction of organoids, three-dimensional in vitro tissue culture models grown from pluripotent stem cells (PSCs), adult stem cells (ASCs), or embryonic stem cells (ESCs) [1]. Originally derived from human tissues, organoids have a self-organization mechanism that can spontaneously produce progenies that resemble the complex functionality and physiology of different organs in vivo via cell sorting [2]. Though miniature in size and possessing fewer cell types [3], organoids can be individualized in a superficial manner to architecturally mimic the structures and properties of several specialized organs of the human body at the cellular level [2]. Past research studies have successfully created organoids that resembled the heart, kidney, lung, retina, and thyroid [4,5,6,7,8]; in essence, the possibilities are manifold. In theory, organoids can serve as substitutes for common animal models to mitigate the ethical concerns associated with the latter [2]; moreover, organoids are more accurate models to work with relative to, say, mouse models because organoids are derived from the tissues of human donors, which would produce more effective results when used in applications such as regenerative medicine, drugs screening, and human development and disease modeling [1]. 

No organoid technology, however, is without ethical flaws of its own; after all, there are serious ethical issues raised as a result of the intimate connection between organoids and the tissue donors from which the stem cells are derived. The present case is reminiscent of HeLa cells, cancerous cells that can reproduce indefinitely but were unethically obtained from its donor, an African American woman named Henrietta Lacks who was diagnosed with cervical cancer [9]. The story of Henrietta Lacks, as portrayed in the biography The Immortal Life of Henrietta Lacks by Rebecca Skloot, scrutinized the critical issue of informed consent (along with other relevant bioethical issues), for Henrietta Lacks was unaware that her cells were taken for purposes that she did not permit before passing away [10]. Likewise, similar novel ethical issues pertaining to organoid technology are called into question and opened to debate. The ethical problems of three distinct subtypes of organoids of interest will be discussed herein in relation to the possible attribution of moral status to these entities: cerebral organoids, gastruloids, and chimeras.

Of all forms of organoids, cerebral organoids are by far the most ethically problematic subtype, as they are derived from neural tissues of the human brain [2]. Yet cerebral organoid models are scientifically and clinically promising in enhancing our understanding of the brain’s relationship with other organs of the body through the integration of various organoids to form a complex known as an ‘assembloid’ [11], as well as understanding the mechanisms that lead to neurodevelopment, neurodegeneration, and neurologic diseases by means of modeling. As a matter of fact, relative to early models that relied on cellular techniques to elucidate the complexity of the brain, cerebral organoids have successfully modeled the pathological pathways that underlie idiopathic autism and virus-induced microcephaly [2], thus shedding light on potential therapeutic strategies and remedies for neurologic disease prevention. 

Notwithstanding the auspicious prospects of cerebral organoids, the ability of this in vitro system in conducting action potentials, forming neural networks, and producing oscillatory electroencephalogram (EEG) wave patterns has given rise to one intriguing possibility: the rise of consciousness in the neocortex of the organoid [3]. While the idea of consciousness is not universally conceptualized and is currently open to many physical and non-physical interpretations (e.g., multiple drafts model, integrated information theory, quantum mechanics) [12], it has been hypothesized that cerebral organoids have the capability to mature and thereby become sentient beings that can react to light or experience nociceptive pain; furthermore, higher-order cognitive functions such as working memory, self-awareness, and fine motor control are postulated to be attainable as well; but such claims are also subjected to intense skepticism [2]. However, under the premise that a cerebral organoid does in fact have the ability to spark consciousness within itself and even exhibit pleasure-seeking and pain-avoidant behaviors [13], it follows that moral status must be partially attributed to the organoid [3]. For a given being, to have moral status is to not be harmed but to be respectfully treated for the sake of the being and their best interests [14]. Hence, cerebral organoids may possess as much moral status as a human—if you acknowledge it as a human clone in this sense—or to a lesser extent, a laboratory mouse, only if it is capable of developing cortical activity-induced consciousness and the associated cognitive traits and sensory inputs over a base threshold. Speaking of which, there appears to be a growing interest in creating a test that can objectively assess consciousness in cerebral organoids. Currently, the perturbation complexity index (PCI) has been used as a measure of consciousness in unresponsive patients suffering from brain injuries [15]. Regardless of future research outcomes, the perception surrounding cerebral organoids is constantly changing; therefore, these models are no longer an exploitable biomaterial that can be arbitrarily subjugated to the interest of the individual who is in possession of the cerebral organoid.

Academic critics such as scientists and ethicists, however, have underscored the notion that cerebral organoids do not (and never will) have the capacity for consciousness due to the lack of social interactions in their given environment [2] and the lack of a vascular system and other relevant cell types that are essential to forming brain connectivity, thereby limiting the degree of neural computation, maturation, and functioning [16]. On the other hand, some members of the public think otherwise, arguing that cerebral organoids can have conscious experiences nevertheless without being faithful to the real human brain [3]. It is also worth noting that misunderstandings of organoid technology are surfacing as a result of false media portrayals [2]. While there are no definitive answers yet to address the fears and worries of organoids until further advances in stem cell biology are made, the problem of cerebral organoids, though, concerns itself around the ethics of this technology given the presumption that moral status is attributed. Under the condition that consciousness does reside within an organoid even after divorcing from its human of origin, are tissue donors able to withdraw their consent [2]? Who has the rightful ownership over the created organoids [2]? Such questions bring up the need for practical models of informed consent, considering that in some cases, donors may develop close ties with their respective cerebral organoids because of a shared identity that is genetically linked; this also implies the risk of privacy invasion [2]. Moreover, is it ethical to genetically manipulate cerebral organoids by means of activating suicide genes that would instigate programmed cell death or expressing specific genes (e.g., MIXL1) that would alter the fate of certain cells to prevent the neural processes that are required for consciousness, despite the underlying possibility? Again, it is difficult to give definitive answers without the necessary methods that can reliably detect consciousness, or lack thereof.  

A conflict in interest also occurs when the donor’s intention is for the researcher to utilize the cerebral organoid for the welfare of others, but external third parties can purchase the organoid from companies who have property rights over the cerebral organoid (if it becomes a patent) and thus receive profits [2] while the donor is most likely not compensated or reimbursed in any form. The commercialization of organoids, in general, becomes more ethically challenging when the party who wishes to buy the organoid is the donor him or herself acting as a patient, because patient-derived, organ-specific organoids can be used as effective models in personalized medicine to help treat the patient and others with the same disease and genetic similarities [2]. Thus, this suggests that patients will become dependent on the companies who can either grant or refuse them access to the organoid, though the latter may lead to public distrust in such companies [2]. In reflection, how much oversight and protection should be granted to cerebral organoids by research ethics review boards and legislation [2]? While the attribution of moral status to cerebral organoids is still under deliberation, the possibility of consciousness should not be neglected even if it is far from fruition when estimating the value of this technology and weighing its benefits with the risks and uncertainties. 

In addition to the discussion on cerebral organoids, another subtype of organoids is gastruloids [2], which follow the same bioengineering protocols as cerebral organoids. What distinguishes these two entities is that in lieu of recapitulating the entire human organ, gastruloids mimic the developmental process that is reminiscent of human embryos in vitro [2]. Structurally, gastruloids are similar to human embryos in that the formation of the primitive streak and cells that are intrinsic to the three germ layers are indeed present in these bioartificial gastruloids [17]. Serving as an alternative to mammalian embryonic models [18], in vitro gastruloids models offer insights into the early evolutionary development of human embryos with contrasts to other animal species, as well as enlighten our understanding of disorders that are linked to pregnancy loss during the first trimester [17]. 

The structural similarities of gastruloids with human embryos signify a paramount notion that was applied to cerebral organoids: the potential to have moral status [2]. What constitutes an embryo is still a question that is without clear answers; however, it is well-established that specifically 14 days [16] is the time span for a cultured embryo to undergo gastrulation—the process by which an embryo develops multidimensional structures from a one-dimensional layer [19]—and reach maturity to eventually become a developing fetus. For gastruloids, it may take less than 14 days to mature [17] and thus the attribution of moral status becomes controversial, and comparable to cerebral organoids, the ethical challenge that must be overcome is justifying the act of preventing gastruloids from becoming a living being through gene knockout so that the expression of the gene sequence that is essential for complete embryonic development is stopped, or in the instance of discarding gastruloids [2]—either of which eliminates the possibility for gastruloids to acquire or maintain life. In principle, the usage of human embryos in research is strongly discouraged or even prohibited in certain jurisdictions, but the moral concern of PSC-, ASC-, or ESC-derived gastruloids that are also found in cerebral organoids complicate their usage in the absence of clear ethical and legal frameworks in regulating the extent of gastruloids’ maturation [17]. 

One additional area of organoid research that is in need of ethical consideration is the farming of interspecies chimeras, living organisms that are created from the combination of cells from two or more species of different origins; for example, the combination of human cells with that of porcine cells to form a human-pig chimera [20]. Chimeras are useful in various aspects of medicine, notably in surgical practices, as they provide a solution to the apparent undersupply of transplantable organs for surgeries. One example includes implanting equine-derived heart values into patients with dysfunctional cardiac valves [21]. Even though organ transplants may cause fears over the unpredictability of zoonotic diseases or xenogeneic organ rejections, gene editing technology (e.g., CRISPR/Cas9) can potentially silence the exact animal genes that are causing such problems [20]. While ethical guidelines for chimerism vary from place to place [21], high concentrations of neurons that can be injected into a mouse brain to create neurological chimeras [22], for instance, have already prompted recommendations to limit the quantity of stem cells that can be derived from a human [2].  

The farming of human-animal chimeras in vitro in which an animal come to possess human organs, moreover, creates an issue of humanizing chimeric animals, as it involves transplanting human-derived organoids into the body of the recipient animal, giving that animal human-like capacities such as consciousness. This overwhelming possibility is demonstrated through implanting cerebral organoids into the central nervous system (CNS) of a host animal (e.g., a mouse), in which the CNS of the host animal have come to exhibit characteristics such as increased size, vascularization, and a vast differentiation of neuronal and non-neuronal cells, thereby offering a more representative model of the human brain [2]. Nevertheless, in certain cases, chimeric animals can become vulnerable to human viruses when human cells are introduced to their biological systems [21], which, again, raises the ambiguous question of whether the chimera bears some level of moral status or not [2], along with other nuanced ethical challenges which pertained to cerebral organoids and gastruloids, considering the fact that consciousness is not uniquely a human characteristic [22]. Another way of humanizing chimeric animals is through implanting human gonadal organoids which would result in the production of human gametes that are capable of reproduction, thereby creating human embryos [21]. The moral concern, in this case, lies in the potentiality of cross-species breeding and reproduction to form hybrid embryos [21]. And while the possibility for chimeras to have human-like characteristics is not believed to be plausible such as in the case of consciousness [21], recent studies have shown that in the microenvironment of a mouse, glial progenitor cells that were derived from a human were more competitive than the mouse glial progenitor cells in composing white matter [23]. Therefore, in terms of applications, the advantages and disadvantages of humanizing animals and animalizing humans should be closely monitored with respect to moral permissibility when crossing the boundary between humans and animals.

Upon factoring in the ethics of organoid technology, the general consensus on the moral status of cerebral organoids, gastruloids, and chimeras in both research and clinical settings is pending. It is a decision that cannot be ill-considered, though the ethical challenges of such advanced stem cell technology and its potential development in the near future should be taken into current views for constructing the appropriate framework for organoid usage. Ultimately, it is the moral responsibility of all parties involved to address the given challenges, for the solutions are heavily connected to the fundamental philosophical question of what it truly means to be human. 

References

1. Azar, J., Bahmad, H. F., Daher, D., Moubarak, M. M., Hadadeh, O., Monzer, A., ... & Abou-Kheir, W. (2021). The use of stem cell-derived organoids in disease modeling: an update. International Journal of Molecular Sciences, 22(14), 7667.

2. de Jongh, D., Massey, E. K., & Bunnik, E. M. (2022). Organoids: a systematic review of ethical issues. Stem Cell Research & Therapy, 13(1), 1-21.

3. Jeziorski, J., Brandt, R., Evans, J. H., Campana, W., Kalichman, M., Thompson, E., ... & Muotri, A. R. (2022, March). Brain organoids, consciousness, ethics and moral status. In Seminars in Cell & Developmental Biology. Academic Press.

4. Voges, H. K., Mills, R. J., Elliott, D. A., Parton, R. G., Porrello, E. R., & Hudson, J. E. (2017). Development of a human cardiac organoid injury model reveals innate regenerative potential. Development, 144(6), 1118-1127.

5. Xia, Y., Nivet, E., Sancho-Martinez, I., Gallegos, T., Suzuki, K., Okamura, D., ... & Belmonte, J. C. I. (2013). Directed differentiation of human pluripotent cells to ureteric bud kidney progenitor-like cells. Nature cell biology, 15(12), 1507-1515.

6. Wilkinson, D. C., Alva-Ornelas, J. A., Sucre, J. M., Vijayaraj, P., Durra, A., Richardson, W., ... & Gomperts, B. N. (2017). Development of a three-dimensional bioengineering technology to generate lung tissue for personalized disease modeling. Stem cells translational medicine, 6(2), 622-633.

7. Eiraku, M., Takata, N., Ishibashi, H., Kawada, M., Sakakura, E., Okuda, S., ... & Sasai, Y. (2011). Self-organizing optic-cup morphogenesis in three-dimensional culture. Nature, 472(7341), 51-56.

8. Antonica, F., Kasprzyk, D. F., Opitz, R., Iacovino, M., Liao, X. H., Dumitrescu, A. M., ... & Costagliola, S. (2012). Generation of functional thyroid from embryonic stem cells. Nature, 491(7422), 66-71.

9. Skloot, R. (2017). The immortal life of Henrietta Lacks. Broadway Paperbacks.

10. Beskow, L. M. (2016). Lessons from HeLa cells: the ethics and policy of biospecimens. Annual review of genomics and human genetics, 17, 395.

11. Kanton, S., & Paşca, S. P. (2022). Human assembloids. Development, 149(20), dev201120.

12. Van Gulick, R. (2014, January 14). Consciousness. Stanford Encyclopedia of Philosophy. Retrieved January 15, 2023, from https://plato.stanford.edu/entries/consciousness/#RepThe 

13. Cohon, R. (2018, August 20). Hume's Moral Philosophy. Stanford Encyclopedia of Philosophy. Retrieved February 2, 2023, from https://plato.stanford.edu/archives/fall2018/entries/hume-moral/  

14. DeGrazia, D., & Millum, J. (2021). A Theory of Bioethics. Cambridge University Press.

15. Sinitsyn, D. O., Poydasheva, A. G., Bakulin, I. S., Legostaeva, L. A., Iazeva, E. G., Sergeev, D. V., ... & Piradov, M. A. (2020). Detecting the potential for consciousness in unresponsive patients using the perturbational complexity index. Brain sciences, 10(12), 917.

16. National Academies of Sciences, Engineering, and Medicine; Policy and Global Affairs; Committee on Science, Technology, and Law; Committee on Ethical, Legal, and Regulatory Issues Associated with Neural Chimeras and Organoids. (2021). The emerging field of human neural organoids, transplants, and chimeras: Science, ethics, and governance. National Academies Press. 

17. Munsie, M., Hyun, I., & Sugarman, J. (2017). Ethical issues in human organoid and gastruloid research. Development, 144(6), 942-945.

18. Rossi, G., Giger, S., Hübscher, T., & Lutolf, M. P. (2022). Gastruloids as in vitro models of embryonic blood development with spatial and temporal resolution. Scientific Reports, 12(1), 1-12.

19. Muhr, J., & Ackerman, K. M. (2020). Embryology, gastrulation. StatPearls Publishing.

20. Koplin, J., & Wilkinson, D. (2019). Moral uncertainty and the farming of human-pig chimeras. Journal of Medical Ethics, 45(7), 440-446.

21. Bourret, R., Martinez, E., Vialla, F., Giquel, C., Thonnat-Marin, A., & De Vos, J. (2016). Human–animal chimeras: ethical issues about farming chimeric animals bearing human organs. Stem cell research & therapy, 7(1), 1-7.

22. Hyun, I. (2019). Ethical considerations for human–animal neurological chimera research: mouse models and beyond. The EMBO Journal, 38(21), e103331.

23. Windrem, M. S., Schanz, S. J., Morrow, C., Munir, J., Chandler-Militello, D., Wang, S., & Goldman, S. A. (2014). A competitive advantage by neonatally engrafted human glial progenitors yields mice whose brains are chimeric for human glia. Journal of Neuroscience, 34(48), 16153-16161.

The Inadvertent Consequences Of Scanning The Human Brain

One inquiry of concern that merited the attention of neuroscientists, clinicians, ethicists, policymakers, and the like over the past decades stemmed from the development and sophistication of advanced neuroimaging techniques. Neuroimaging has become a revolutionary tool in the frontier of neuroscience for both diagnostic and research purposes. Since the emergence of neuroimaging technology, physicians have employed structural imaging, such as magnetic resonance imaging (MRI) and computed axial tomography (CAT), to help visualize the anatomical structures of the brain, thereby facilitating diagnoses for neurologic or psychiatric conditions (e.g., Alzheimer’s disease, brain cancer, schizophrenia) in patients as a supplement to genetic tests and other examinations [1]. These structural imaging modalities are often used to complement functional imaging modalities, which are frequently used by researchers to examine the brain activity of participants in real-time when instructed to perform certain tasks or react to stimuli in both healthy or diseased brains; examples of such modalities include, inter alia, functional magnetic resonance imaging (fMRI) for measuring blood flow, positron emission tomography (PET) for measuring metabolic activity [2], and magnetoencephalography (MEG) for measuring magnetic fields from electrical currents in neurons [3]. 

Each neuroimaging technique has its own advantages and flaws; for example, the limited temporal resolution of fMRI is compensated with the high temporal resolution of MEG in a combined-modality to render more useful neuroimaging data [4]. In imaging studies that require a large pool of participants, fMRI lowers the risk-benefit ratio as it is less invasive relative to PET (which involves the injection of radioactive contrast agents into the participants) [2]. The capability of neuroimaging further extends to revealing one’s unconscious thoughts [1] and evaluating one’s susceptibility to a particular disease or behavior [2]. Yet for each capability rendered by neuroimaging, there are subsequent inadvertent consequences that are worthy of neuroethical analysis in relation to medical, social, and legal issues and challenges. 

A prevalent occurrence in research studies (as well as in clinical practices) involving human subjects undergoing neuroimaging procedures is the unintended discovery of incidental findings—neurological anomalies that are unrelated to the objective of the brain scan [5] but may contain clinical significances (e.g., the detection of asymptomatic brain tumors or cysts). Depending on a multitude of factors, such as participants’ age and the region of the body that is being scanned, the likelihood of incidental findings, in general, can occur in approximately 2% of imaging scans in the lower extreme and 47% on the higher extreme [6]. Under such circumstances, the appropriate management of incidental findings, especially in brain scans, poses ethical dilemmas during, say, the process of informed consent or deciding whether the incidental finding should be disclosed to the subject or not, if detected. 

It can be agreed upon that it is ethically sensible to report incidental findings to research participants for their own health benefit; the story of Sarah Hilgenberg is one prime example. When Hilgenberg was a medical student at Stanford, she participated in an fMRI study on learning and memory. It was later revealed that Hilgenberg had malformed connections between the blood vessels in her brain; a condition known as arteriovenous malformation which could lead to bleeding due to high blood pressure and further complications if left untreated. Hilgenberg claimed that this incidental finding had positively affected her life and she felt grateful in retrospect [7]. While revealing incidental findings to the subject is done so in the interest of the participant, such events may also act as a psychological burden on the person. There was a case where an anonymous correspondent wrote to the journal Nature, stating how he was informed of a tumor in his brain upon volunteering to help test a new MRI machine. In the aftermath, the said individual had to undergo neurosurgery to remove the tumor but it cost him and his family everything financially because his medical insurability was adversely affected due to having knowledge of the scans [8]. In other cases, incidental findings may also cause unnecessary treatment when a clinically insignificant finding is perceived to be significant, or in the event of false positive results [2]—all of which may cause severe emotional and financial distress for the participant. 

Disclosing incidental findings, therefore, can have negative implications from the perspective of the participants, even though one study’s data suggested that over 90% of participants wished to be informed in the event of incidental findings [9]. Given the uncertainties associated with incidental findings over the course of neuroimaging studies, transparent protocols (e.g., facilitating direct communication with the participant, reporting incidental findings to a research ethics review board) should be implemented beginning with the process of informed consent to ease tensions among participants [10]. It is the researcher’s moral and legal obligation to manage disclosures and non-disclosures in respecting the participants’ autonomy and interests while taking into account the clinical relevance of the incidental finding(s).    

On top of incidental findings, the wealth of neuroimaging databases and discoveries in social neuroscience experiments have presented thought privacy and confidentiality as integral issues to the ethics of neuroimaging. Intimate and personal thought processes that are distinctive to an individual can be captured during neuroimaging to yield brain activation profiles. Individual thought privacy is thus at risk as researchers in past studies were able to pinpoint the exact neural correlates for cooperation, rejection, moral judgment, implicit racial biases [11,12,13,14], and a myriad of other human social behaviors that are grounded in personal thoughts and the subconscious mind. The Human Brain Project and the International Consortium for Brain Mapping (ICBM) are just a few of the large-scale research initiatives that possess an archive of neuroimaging databases in which data can be easily accessed and shared [2]. Data confidentiality is thus an ethical concern, for researchers could identify individuals based on their corresponding neuroprofiles, and this is reflective of how genomic data are being handled. Neuroimaging data could also be commercialized to for-profit sectors since there are neural correlates for economic decision-making among consumers, which are heavily utilized by companies as a neuromarketing strategy that puts consumers’ confidentiality at severe risk [4]. As a result, this raises the need for individuals to prevent traceability by means of securing their cognitive liberty—the right to have autonomy over individuals’ own mental processes [15]. The idea of cognitive liberty is often raised against neuroimaging because of a prevalent Orwellian fear: those who can probe into our brains can act as a ‘Big Brother’ figure and seek contents that the subject is unaware of or does not wish to be known. 

One prominent application of neuroimaging that emphasizes the medical implications of neuroimaging is predicting the onset of neurologic or psychiatric disorders prior to the appearance of overt symptoms [4]. By identifying potential biomarkers or recognizing regional brain activation patterns or neural signatures that are characteristic of the pathological mechanisms of a disease, one’s risk for developing a particular kind of disease can thus be probabilistically assessed [2]. However, one problem with predictive neuroimaging is that probabilistic data are not strictly reliable given the complex and plastic nature of the brain and that the covariance between image data and human behavior does not suggest causality when external factors like culture play a role [4]. In addition, many disease pathologies are not well-understood yet and could therefore lead to the premature application of neuroimaging techniques in this regard [2]. Furthermore, while predictive neuroimaging may encourage early disease prevention through therapeutic interventions, individuals who are at risk of a prognosed disease may be subjected to societal stigma and discrimination, [2] as this is oftentimes seen with respect to vulnerable populations and minority identities.  

The underlying cause for this social issue of stigma and discrimination can be attributed to the popular media’s tendency to oversimplify and overinterpret neuroimaging data through reductionist and pessimistic stances in a manner that supports deterministic beliefs [2]. The media portrayal of basing our essence upon neuroimaging results—a view known as ‘neuroessentialism’—can effectively shape the public perception to develop stigmatizing and discriminatory tendencies and thereby ostracize those with neurologic or psychiatric conditions [2]. This further creates a divide between what may be perceived as “superior” and “inferior” brain characteristics and promotes a non-moralistic view of human nature such as fatalistic biological determinism [2], the notion that our physiology or genes are the roots of our behavior and personality [16]. Hence, a misunderstanding of neuroimaging data could be damaging for vulnerable populations, and the burden of having such knowledge from predictive neuroimaging should be carefully communicated with those who may be at risk. Otherwise, access to insurance, education, and employment may be limited or denied for individuals living with an invisible disease [17].

Neuroimaging data could be used in greater detail in the criminal justice system which may result in legal complications. Ever since the gradual improvement of neuroimaging techniques, brain scans can be used as admissible evidence in court cases related to murder convictions, for example, when questions regarding sanity are raised for the individual that is convicted (this often necessitates psychiatric assistance) [17]. To illustrate its application, in a 1992 New York Supreme Court case People v. Weinstein, the defendant Herbert Weinstein was charged with second-degree murder for killing his wife. Yet, PET scans revealed that Weinstein had a psychiatric defect in which an arachnoid cyst was found in his brain which may have influenced him to act with violence; ultimately, Weinstein’s murder conviction resulted in a manslaughter plea [17]. Hence, whether a convicted individual should be vindicated from his or her crime or not becomes disputable when neuroimaging suggests that it is possible for individuals to be predisposed to committing aggressive and recidivist acts such as homicide as a consequence of brain damage or even childhood abuse and neglect [4]. Indeed, neuroimaging studies have shown that individuals with impaired prefrontal cortical functioning demonstrated a lack of ability to control impulses, assess risks, and empathize—behavioral characteristics that are common among criminal offenders [4].

Another implementation of neuroimaging in the field of forensic science is a practice known as brain fingerprinting, where an individual’s brain waves (P300) are measured using an electroencephalogram (EEG) in response to information and facts that are relevant to the case in question [4]. The stimuli are presented in millisecond intervals to test for P300 wave responses [18]. Arguably, neuroimaging may help discern “truths from lies or real memories from false ones” according to lawyer and law professor Henry Greely [17]. Such was the case for Terry Harrington, who was convicted of murdering a retired police officer in 1977 and was thereafter sentenced to prison after the verdict in the Iowa Supreme Court case Iowa v. Harrington [18]. However, Harrington’s murder conviction was later reversed when he underwent brain fingerprinting in 2000 and had negative results, in which no P300 wave signals were evoked in response to details that were related to his case [18]. Of note, however, that using neuroimaging for lie detection does not assure absolute accuracy as promised and rates of error are uncertain [19]. 

While it is crucial to consider mental defects and diseases in convicted individuals, to what extent is the linkage between brain abnormality and criminal behavior sufficient to prove someone as free of legal responsibility? How reliable and valid ought neuroimaging data be prior to being used as admissible evidence in court? Does forcibly imaging the brain of the offender in search of incriminating memories or other information violate the 4th and 5th Amendments to the U.S. Constitution [19]? The fine line that distinguishes innocence from guilt in such cases is blurred by the foregoing concerns, and the ethics surrounding the usage of neuroimaging as part of the judiciary process remains to be scrutinized.

The key in regard to neuroimaging and its ethical framework relies on the proper interpretation and application of neuroimaging data while considering the many limitations of neuroimaging. Thus far, neuroimaging technology has yet to reach the level of direct mind-reading but offers many inferences into our innermost thoughts and psychological traits. Neuroimaging can be pervasive in many domains of our life beyond medically diagnosing and treating patients; chiefly toward influencing societal viewpoints and legal decisions that could have unforeseen ramifications and even as far as putting individual lives and values at their most vulnerable state. 

References

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