Henrietta Lacks, Beneficence, and a Right to Healthcare

The first section of The Immortal Life of Henrietta Lacks contains real instances in which many of the topics we have discussed about ethical problems in medical practice arise. One instance where many dilemmas were extremely clear to me was discussed at the beginning of chapter eight when Henrietta felt that the cancer was metastasizing in her body. Lacks repeatedly told doctors that she was not doing well, first feeling discomfort and then pain but they continually examined her and reported that she was fine. A few weeks after the first complaint however, doctors discovered an inoperable mass on Henrietta’s pelvic wall causing her so much pain and ceasing her ability to urinate and walk. Skloot, the author, reminds readers that benevolent deception was extremely common during this time particularly for black patients being treated at public wards. While there is no way to ensure that the financial and class relations that arose for Henrietta at Johns Hopkins played a role in her treatment (or lack thereof), research has demonstrated that black patients were hospitalized later, received less pain medication, and had higher mortality rates than white patients of her time. 

At the time Henrietta sought treatment, doctors may very well have been practicing paternalism by not relaying to her the terminal status of her cancer. However, I would argue against the plausible beneficence enacted. While I understand at the time it was common practice to not inform patients of illness because of the fear they may become desolate during the limited time they will live, in this instance patient autonomy should have definitely been a priority. If Henrietta knew that she only had a limited amount of time left, she may have spent more time with her family or put aside things for her children to remember her with. Also, the topic of healthcare injustice is extremely pertinent in this situation and is likely the true reason for why Lacks was not treated promptly, not merely doctors practicing an outdated custom of beneficence regarding terminal illnesses. Referring back to Daniel’s position on healthcare as a right to normal functioning, Henrietta was not able to go visit another hospital because of the discriminatory rules against black people seeking treatment at most hospitals. The opportunities Lacks had throughout her life were not equal due to the prevailing racism of her day, and unfortunately those inequities manifested in her ability to seek medical care for cancer.

A moral evaluation of Gey

In “The immortal life of Henrietta Lacks”, Skoot explores the struggles that Henrietta had during her treatment at Johns Hopkins hospital and exposed the racial segregation and lack of ethical guidelines underlying in the medical field which allowed Henrietta’s cells to be collected without her consent. The story discusses several ethical dilemma’s including the mistreatment of the colored and the controversy surrounding the idea of “benevolent conception”, or the idea that it was morally permissible to withhold essential information about the patient’s condition from patients (especially colored), based on the justification that information would only confuse patients and that medical information was only useful to doctors who had professional knowledge.

It is obvious that through modern eyes, the act of extracting Henrietta’s cells without her consent is morally unjust, as it violates the idea of an informed consent, or the idea that it is essential for patients to be fully aware of the medical procedures that are being carried out as every patient’s autonomy is intrinsically valuable.

However, Skoot’s portrayal of Gey’s immoral practices on Henrietta should not be judged based on presentism, but rather by considering how hard one tried to act the best morally considering the different moral and social norms during the early 1930s was different from today. In a society in which racial segregation and mistreatment of the blacks were common, the Johns Hopkins institution’s mere acts of attempting to cure black patients, including Henrietta, is surely a moral improvement compared to how blacks were treated before.

The particular discussion about presentism and the changing moral norms made me question the Kantian notion of an unchanging fundamental moral principle and lead me to believe that morality is relative to the people who discuss it and is constantly changing.

Also, the idea of “benevolent conception” may be morally justified as a form of paternalism intended to protect the patients during that time, given that many of the black population were illiterate and unfamiliar with medical practices, they could be considered as less autonomous and rational compared to a modern person who could easily acquire knowledge about medical practices and assess the implications that it might have on one’s health, and were better off with other professionals deciding what is best for them.

However, considering that Henrietta would have rejected the radiation treatment if she knew that she would become infertile, or may have given consent to Gey collecting her cell knowing that it would help millions of people, Gey’s act may lean more towards being selfish and goal-oriented rather than being paternalistic and in care for the patient even when taking the racist social norms into account. Nonetheless, I am not confident with my moral evaluation of Gey’s character, as I believe that further inquiries about the particular social norms and contextual information is necessary. Perhaps, we should question whether moral evaluation of character in the past is fair or valid at all, given the uncertainty and the limits we face in fully understanding how events in the past occurred.

Buchannan’s arguments to replace the “universal” right to a decent minimum of healthcare

In “The right to a Decent Minimum of Health Care”, Buchannan breaks down the controversial topic of the “universal right” approach to implementing healthcare. According to Buchannan, this notion of a universal right to a decent minimum is popular for three main reasons: the allowance of societal-relativity, the avoidance of strong equal access, and the attraction of the most basic services. Societal-relativity speaks on the direct, as opposed to inverse, the relationship between the amount of resources and standards of services. As more resources become available the standards of our healthcare services should rise. Strong equal access has its flaws in its stringency, either we all have very low healthcare for everyone or high standard healthcare despite the depletion of resources. It’s an unrealistic expectation that seems reasonable to want to avoid. Finally, the idea that we could achieve within our limits very basic services of healthcare for all people does become somewhat undesirable when its goals are “tolerable living”. I would have to interject for this last notion due to the fact that there is socioeconomic inequality throughout this country and “tolerable” for some may be miraculous for others so to assume “tolerable” as a description is inadequate is rather narrow-minded.

But what Buchannan wants to stress is that these factors are not enough to justify enforcing a decent minimum and he proposes new supporting evidence towards the idea. He believes his supporting arguments,  Special Rights, Harm prevention, and Prudential arguments, create a more adequate supporting theory in explaining why and also how we could achieve a decent minimum. Special rights involves specializing services for those who may have faced past institutional injustices in the healthcare realm, those who have been unjustly exposed to health risk, and those who have gone through major sacrificial instances such as service in the military. It makes sense to provide extra or possibly just more appropriate care to these protected classes. He then pushes the generally accepted idea of harm prevention, giving the examples of mass sanitation and vaccine, as a different way of achieving a decent minimum. He lastly brings forth the lesser morally cushioned idea that rides off the back of capitalism and that concerns keeping a work and defense force healthy enough to keep the economy and protection of this country stable. It’s a benefit that can be quantitatively measured and is hard to refute by those who don’t value health safety or empathetic reasoning quite as much. So his arguments overall make perfect sense.

However, I can’t say that his arguments are any more thorough in the fight for good healthcare. He combines his methods without putting an official name for them but they essentially support the same things as the declared universal right to a decent minimum. Even the point concerning specialized care is some form of the universal right to a decent minimum just simply with a prescribed context: all military participants need this all-encompassing specialized care. So, while I agree with his theories I support them as a supplement in addition to the current goals of a decent minimum.

An Examination of Buchanan and the Various Right-Claims to Decent Minimums

In this key excerpt from Securing Access to Health Care, Allen Buchanan explores the divergence between the universal right to decent minimums and practical policy of universal decent minimums. While he does assert that the universal right does not imply that such policy should be enacted, he also is cognizant of the fact that certain arguments do warrant such action. The crux of Buchanan’s argument resides in the key distinction between a right to overall, minimal, welfare floor of health for all and the availability of everything that can be done to ensure the overall health of all. A salient aspect of his argument that was specifically resonant to me was his “argument from special rights”. 

In this argument, Buchanan identifies three groups that should be given precedence in determining if they have a right-claim to universal decent minimums: historically marginalized groups such as African Americans or Native Americans, groups that have been harmed by a specific health risk such as victims of chemical exposure, and groups that have incurred harm through some sacrifice to the greater good such as veterans. These arguments, at the surface level and even to some scrutiny, hold up very well. They tie back to the central notion of injustices being redeemed or sacrifice being rewarded. I found a strong correlation between these philosophical relationships and prescriptions and the larger ethical ideas of Virtue Ethics, which emphasize mind, character, and sense of honesty. Assisting those who have sacrificed significantly relates to character, and repairing injustices speaks to a notion of honesty. 

Generally, I agree with this premise that Buchanan puts forth. However, upon closer examination, his ideas do have some inconsistencies. For example, the definition and scope of “injustice” is very subjective. People may define systemic injustices differently and believe that different groups are deserving of the preference and right-claim that Buchanan supports. This makes forging domestic healthcare policy very difficult. The same can be argued about his notion of sacrifice. Some may believe military service to be a sacrifice for the greater good, but others may deem it an unjust act. Empirically, this can be seen in the treatment of veterans after the Vietnam War. Exactly which groups are deserving of this treatment becomes very ambiguous in such cases. However, extrapolated to a more nuanced understanding of such policy, these ethical ideas may in fact function if and only if they are implemented as one aspect of a multifaceted healthcare objective.

Buchanan and the Right to a Decent Minimum

In “The Right to a Decent Minimum of Health Care,” Allen Buchanan begins by clarifying what constitutes something as a right. He explains that just because we can agree that people would benefit from having guaranteed healthcare, this doesn’t mean that anybody has a true right to healthcare because there is no solid justice theory supporting the right. In other words, just because something is “good” doesn’t mean we are necessarily entitled to it. 

Buchanan then explains that providing a decent minimum of healthcare can be very attractive, but before determining whether or not this idea should be implemented, people must agree upon what is considered a “decent minimum” and what procedures and treatments would be covered under such a plan. If the standard for the “decent minimum” is set low, Buchanan argues that people should be allowed to spend additional money on a higher-quality healthcare plan if they please, no different from how people can choose to spend their money on other items, like fancy cars or other expensive items. This would mean that wealthier people would still have an advantage when it comes to healthcare. If the standard for the decent minimum is raised, there could potentially be a shortage of resources. 

While I understand the point he makes, I disagree with Buchanan’s argument that healthcare is not a right. The US Constitution outlines Americans’ rights to “life, liberty, and the pursuit of happiness.” Does access to a basic level of healthcare not fall under the category of life? I don’t necessarily believe that every non-essential or extremely expensive procedure should be covered under a standard form of healthcare provided to everyone, but some more commonplace procedures can be the difference between life and death.

While I agree that people should be able to spend the money they earn however they please, I feel allowing people to pay for a more advantageous healthcare plan draws a huge gap between different groups in our society. The only way to prevent this problem is to ensure that the decent minimum encompasses any illness or condition that can be potentially life-threatening, even if it may be more expensive. Obviously a decent minimum cannot include everything, or it wouldn’t be considered a minimum. However, it’s important to note that there’s a tremendous difference between not being able to afford a new car and not being able to afford cancer treatment, for example. While having the new car may be desirable and beneficial, not having this luxury is not immediately putting anybody at harm. Healthcare, on the other hand, can be a matter of life and death in many cases. 

Buchanan’s point that there is no direct right to healthcare may be valid, but there is no denying that every American has a Constitutional right to life. Because certain procedures and treatments can save lives, denying a livable, decent minimum of healthcare is a right because it provides people with the means they need to live.

The Need for a Minimum Amount of Healthcare

The debate about the best ways to make healthcare both accessible and fair impacts our modern political, legislative, and judicial systems constantly. The Affordable Care Act has been a political hot topic for years now, forcing the question of who is entitled to what type of healthcare to be regularly brought up. In an effort to answer this, Norman Daniels proposes the idea that individuals do have a right to healthcare, which he justifies using John Rawls’ argument of the right to “fair equality of opportunity”. Rawls’ theory states everyone is entitled to have an equal chance to obtain the “basic goods” of society, and Daniels argues that healthcare must be considered one of these. Without strong and easily accessible healthcare systems, individuals are not able to achieve their normal functioning, blocking them from using societal resources to become their healthiest selves. 

Though Daniels does argue that healthcare is a moral right, he also highlights various problems that could arise during distribution. With technology constantly changing and becoming more expensive, guaranteeing absolute equality in healthcare access is simply not economically feasible. The innovative technology must be utilized by some, though, and it is hard to decide who should and should not use it. Daniels does state that individuals with diseases or disabilities that seriously impair their opportunities should be given priority, which could be seen as a small solution. Justifying unequal access to treatments and technologies is still challenging, though, but requiring a right to a minimum amount of healthcare could help remedy this issue. I argue that all individuals should be entitled to a yearly physical, some preventative treatments, and medical testing. This would cover basic healthcare needs, allowing people to better function and improve their personal welfare. A minimum amount of healthcare would help individuals not constantly stress about how they are going to pay for their treatments or debate if going to the hospital is worth the astronomical cost. Without the stress of making payments, individuals’ mental health would improve as well, allowing them to further flourish. If there were clear guidelines created about what constitutes the minimum amount of healthcare, there would be no need for more debates and legal battles about the topic. Politicians and lawmakers could focus their energy on other issues, leading to an overall improved society.

Norman Daniels and the Problem of Autonomy

In his writing, Daniels breaks down different justice theories and finds their merits and shortcomings as a way to expose the true complexity of the issue of universal healthcare. One of the challenges he notes is that none of the moral philosophies directly mention the dilemma of healthcare–leaving uncertainty surrounding definitions and interpretations. His most engaging review was of the ideas of equal opportunity and moral contractarianism. In this, he looks at John Rawls’ theories and applies them to medicine. Rawls’ theories are based in a society structured by individuals from behind a “Veil of Ignorance”. From this Original Position, society’s governing principles will always resemble the Equal Liberty Principle and the Difference Principle. The Equal Liberty Principle states that everyone should have equal access to the largest set of liberties possible. Daniels argues that if this moral philosophy is followed, then every individual would not only have the right to equal healthcare but also to an equal baseline standard of physical and mental well-being. “For example, if through medical intervention we can ‘enhance’ the otherwise normal capabilities of those who are at a competitive disadvantage, then our commitment to equality of opportunity requires us to do so” (Daniels 766). In his view, if individuals were not all at the same starting point, then the Equal Liberty Principle would be violated since individuals would not truly be able to have access to the same opportunities.

Though Daniels’ argument lays a strong foundation for the merits of universal healthcare, his interpretations of contractarianism and the Equal Liberty Principle bring up important questions about the autonomy of individuals. Respect for autonomy is a cornerstone of an equal and just healthcare system and should be thoroughly evaluated before implementing further plans. Deciding on concrete expressions of normalcy brings up questions about the motives and justification behind deciding what traits are valued, and if that diminishes autonomy. For instance, in Deaf culture, there is backlash against defining deafness as a “disability”, and even resistance to using medical interventions to restore hearing (Byrd, Serena et al. 2011). The Deaf community, as well as many other individuals with disabilities, embrace their “differences” and use them adaptively to enrich their lives. It would be a detriment to the autonomy of individuals if these differences were eliminated solely for the purpose of strict adherence to the Equal Liberty Principle. 

A definition of normalcy that draws a hard line regardless of individual circumstances would be in direct contradiction with Aristotelian views of human flourishing and opportunity. An individual can only directly experience their life, and Aristotle would argue that through this experience, a person becomes moral and experiences personal worth or happiness. Deciding to make decisions about individual worth and happiness on a population-level is a serious drawback of Daniels’ framework. Understandably, some concessions have to be made when modeling a system for a large group of people, however, the violation of autonomy is something that needs to be considered very closely.

Byrd, Serena et al. “The right not to hear: the ethics of parental refusal of hearing rehabilitation.” The Laryngoscope vol. 121,8 (2011): 1800-4. doi:10.1002/lary.21886

Considerations for Daniels’ Right to Health Care

Norman Daniels argues a positive right to healthcare, in which others have a duty to help right-bearers obtain that right, on the basis of Rawls’ contractarian theory of justice. He claims that disease and disability limit one’s range of opportunities, and therefore, a right to health care ensures “normal functioning” so that physical or biological disadvantages are not barriers to fair equality of opportunity. However, he acknowledges that there must be constraints to such a right, especially since resources and technology are limited. He seems to suggest that when choosing where to invest medical resources, treatments that meet fundamental health care needs (as opposed to cosmetic surgery, for example) or proven effective treatments (as opposed to experimental treatments) may be prioritized.

From a distance, Daniels’ “fair equality of opportunity” argument is generally convincing; however, when narrowing in towards more specific healthcare scenarios, this theory alone may be insufficient in providing answers. For example, what does “fair equality of opportunity” support when it comes to issues of abortion? Abortion is not necessarily categorized as either a treatment for disease or disability (which are largely what Daniels refers to), and rather than being an issue of justice, it might be more helpful to weigh abortion through a lens of autonomy vs. nonmaleficence. Another scenario to consider may be whether it is worth investing such a large chunk of healthcare resources for the elderly, some of whom may never really achieve “normal functioning” again. In the proposed situation, various parts of Daniels’ argument appear to clash. In a perfect world, the general concept of a right to healthcare seems to warrant taking age out of the equation; in agreement of this, Daniels opposes purely utilitarian justifications and discrimination in the distribution of healthcare. However, in acknowledging resource scarcity, Daniels seems to value the allocation of resources to the most people rather than directing these resources to a few who are furthest away from “normal functioning,” which takes on a utilitarian stance despite his initial criticism of utilitarianism. These contradictions in Daniels’ reasoning make it difficult to speculate where he actually stands in some of the most controversial issues of healthcare.

That being said, I agree with the general notion of a right to healthcare; I simply derive my criticisms of Norman Daniels’ piece not out of disagreement but rather to suggest areas in which Daniels can strengthen his support for such a right.

Norman Daniels and the Normal Function Model

In discussing the candid distribution of healthcare in modern-day society, Norman Daniels focuses mainly on his philosophical theoretical concept of “normal functioning” to justify healthcare as a right. Daniels also argues that healthcare is a positive right (a right that requires someone, in this case, the state, to engage in certain policies). Therefore, the state must enact comprehensive healthcare laws to protect its citizens. Within this argument, Daniels also actively refutes the ideals of utilitarianism and argues that they have no logical place within the sphere of healthcare. The normal functioning model that Daniels argues is, in my opinion, a comprehensive, accurate, and well thought out healthcare policy. If the medical establishment is solely committed to keeping patients within their normal functioning range, it would allow for complete care for very sick patients whilst also preventing the dangerous over-extension of healthcare programs, therefore also accounting for resource-oriented concerns.

To accurately dissect and analyze this argument, we must first understand the core piece of Daniel’s theory: that of the “normal functioning range”. To simplify this analysis, I will use a color-oriented method. Daniels argues that every human properly functions within a range- consider this the “green zone”. Within this zone, a person is medically well enough to pursue and attain opportunities within the social, political, economic, and personal spheres of their lives. Consider a patient in this green zone who then contracts a debilitating condition such as breast cancer. Look at this as the “red zone”. Within this zone, the patient is unable to attain success in any of the previously identified fields because of his medical condition. It is in this case that Daniels believes that the patient should have equal access to healthcare- to nurture him/her back inside their normal functioning range. This system would place a higher priority on patients whose conditions obviously inhibited their ability to attain success in their lives. 

It is important to note the distinction between Daniel’s argument and the theory of utilitarianism (absolute healthcare equality for all conditions). Daniels refutes this theory for the following reasons: it would not likely be economically possible, the difficulties of justifying any unequal access that would arise, and finally concerns about autonomy and paternalism (e.g could you refuse treatment in a universal healthcare society? What about changing or choosing which practitioner you saw?)

When analyzing this healthcare model, it is critical to consider the impacts this would have on medical practices that do not focus on bringing patients from the “red” to the “green” zone. This can be examined through Daniel’s “Treatment/Enhancement Distinction”. Daniels believes that healthcare should only be responsible for treating sicknesses and that a right to healthcare does not include treatment made to improve conditions that don’t’ take a person out of the “green zone” (e.g genome mapping technology, inherited trait modifications on fetuses). This would restrict healthcare to necessary practices, which Daniels believes is necessary to preserve moral integrity of healthcare.

I agree with Daniels in almost every facet of his argument. The only criticism I have is that of varying definitions of the normal function. Just as Goldman argued with his theory of value orderings, could different patients not have different intrinsic definitions of their own “successes” or opportunities in life? In this situation, Daniel’s model falls apart- when there is no one-model-fits-all that can be applied to the normal function.

Analysis of Buchanan’s Position.

Buchanan defines his position on the conversation of seeking a decent minimum form of healthcare as one that identifies the concept of a decent minimum as morally and ethically correct, but not obligatory on its own. The topic provides additional insight and philosophical precedent to the current conversations being had in our nation regarding access and availability of healthcare and insurance. There have been many efforts in the past to build a system that bolsters the current minimum, seeing that America ranks far behind its competing nations, despite proportionally spending the most on healthcare in comparison with other industrialized nations. Buchanan asks a powerful question in the beginning portions of his writing, seeking to highlight the ambiguity buried in the right to a decent minimum form of healthcare. He mandates that, before one can continue onward towards the conversation of whether or not a decent minimum of healthcare is a right, one must complete a preliminary analysis of what exactly that decent minimum entails. Buchanan solicits the example of servicing descendants of Chattel Slavery with recuperative healthcare strategies in response to the epigenetic trauma and disposition they have been caused. He views this application of the decent minimum as acceptable, as it helps to level the playing field for a disenfranchised demographic. He validates equivalent acts as potentially applicable forms of the decent minimum. Holistically, Buchanan points out the difficulties in identifying the concept of a decent minimum of healthcare as a right, and does well to explain how an ideology can exist as something that is beneficial to the masses and in the best interest of the nation or presiding body, but still not meet the criteria to be considered a right. He clearly evaluates the complications with establishing a comprehensive framework for a decent minimum of healthcare, as there are many variables that come into play that can affect the level of care one may be provided, which in turn makes it more and more impossible to uphold that established decent minimum.