Max’s article in The New Yorker illuminates the many stories of people around the world who were shamed by the public, and sometimes even the government, who contracted Covid-19 or were presumed to have contracted it. The most prevalent way that people have been shamed has evolved over time from being held in the public square, to printed in the newspaper, to broadcasted on TV, and now to being publicized on the internet for the entire world to see. This has contributed to people publicly disparaging others in countries far away from their own and can be considered a part of “cancel culture.”
Shaming is beneficial and can be an effective tool for deterring negative behaviors when it is done by someone that the person being shamed, prior to the process of shaming, respects the authority and opinion of. Thus, it is most beneficial for the shamer to be someone close to the person being shamed and in the private sphere, as in the case of a parent saying they are disappointed in a child or a friend intervening in another friend’s destructive lifestyle through shame. It is for these reasons that shame in our culture has a strong basis in deontological philosophy, for it often is employed to evoke feelings of moral regret for one’s “wrong” actions. Cancel culture, in both the context of the pandemic and elsewhere, is the prime example of this because the public withdraws their support for objectionable behavior often in an extremely cruel manner.
All of this calls into the question of whether or not extremely public shame as seen on Twitter and Facebook, centered around Covid-19 actions or otherwise, is really a beneficial activity for people to engage in. While it may deter behavior for some, it could also have no effect because people may not care what random other people comment on the internet, or it could have worse implications such as suicides that Max mentioned in his article. Should an action continue if it works in some situations but is detrimental in others?
Ed Young’s article detailing the “failure” of America’s response to the Covid-19 pandemic highlights many of the inequalities and healthcare problems pervading our country. He explains that women, the elderly, dementia patients, people with mental disabilities, Asian Americans, Black Americans, Native Americans, and Hispanic Americans have all been disproportionately affected. Young continues to expand on how Black Americans have been impacted, explaining that they account for 30% of the 3.1 Million people in America who cannot afford health insurance and claiming that this is a modern day continuation of Jim Crow when hospitals were not built around Black communities and Black patients were separated into separate hospital wings if they were able to seek treatment. Former slave states, he cites, were some of the first to lift social distancing measures around Covid and invest the lowest amount of money in public health. The result? Covid has disproportionately affected the Black community as a result of the medical disadvantages already in place, higher rates of chronic illnesses, and their roles as low paid, essential workers. All the “existing inequities stack the odds in favor of the virus.”
The parallels between Black American’s lives now, spotlighted through Covid-19, and Henrietta Lacks’ story 70 years ago are shamefully similar, because she as well as her family faced numerous inequalities when seeking medical treatment, were effectively being forced to work and live in unhealthy environments, and possessed distrust in medicine resulting from their experiences. Henrietta had to drive or walk a very far distance to get to Johns Hopkins, because there were no hospitals near her that would treat black patients. They lived next to toxic factories and the men worked there to support their families. Additionally, all the Lacks were wary of going to the doctors because of fear at how they would be treated, exactly similar to a patient in Young’s article. The fact that Black patients, and really all Americans, are still not being treated equitably in regards to medical treatment is a disgrace. It makes me think back to Daniel’s article, stating that everyone is entitled to the necessary resources to achieve “normal functioning” in society and compete, as equally possible, for opportunities. Healthcare is thus a right to achieve said normal functioning, and it not being available impedes citizens ability to thrive. The question again however thus arises, what really is “normal functioning” and even if it is achieved, how do we address the problem of people continually being exposed to Covid-19 because of their area of work?
In part three of The Immortal Life of Henrietta Lacks one of the pertinent ethical problems exemplified through events in the book is the problem of ownership and commercialization of biological material. Henrietta’s family comes to find out that their mother’s/wife’s/sister’s cells are being sold for $25 a vial and thus were making a very large profit for those selling them. However, the Lacks’ had not seen any form of compensation from the profits of Henrietta’s cells and struggled to even afford medical insurance to seek care for themselves. In addition to this, Skloot explains the story of the Mo cell line in which John Moore’s spleen cells were taken by his doctor and sold to biomedical companies, without his consent, to result in an industry worth $3.5 billion. Moore sued his doctor for lack of informed consent and stealing his cells, but ultimately the case was dismissed with the Supreme Court of California declaring that once your tissues are out of your body, they are not yours. In addition, they were now deemed an “inventive effort” due to the fact that Moore’s doctor had “transformed” them through his research.
In both of these examples, there is a very blatant and clear violation of Kantian autonomy principles which state that the demands of treating people as autonomous will dictate the extent to which you can treat people as means. The doctors have been placed in a position of power over patients and research subjects, and have taken advantage of their privilege to exploit the people they are supposed to be helping and instead used their cells for financial gain. Both Henrietta and John did not have the power to determine what happened with their cells, but instead had to yield the doctors decisions who were really supposed to be caregivers to their patients, not business people. They were used as means and not ends in and of themselves, and their stories serve to highlight the inherent inequalities that arise between people’s statuses as either patient or physician.This leads me to question, can a doctor ever be entirely invested in seeking to help their patients in the most beneficial way if they also have coinciding monetary, research, or career incentives to treat, cure, or operate in a certain way?
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.
Faden and Beauchamp make the claim in “The Concept of Informed Consent” that it is possible to have sense1 of informed consent (autonomous authorization) and fail to have sense2 of informed consent (policies that are enforced in the context of institutions). It is also possible they claim to have the roles reversed, where informed consent in sense2 has been achieved but not sense1. Their argument is valid, however in order to resolve many of the issues they bring up near the end of the selected passage, it is imperative to implement (or atleast strive to do so to the best of one’s ability) both sense1 and sense2 of informed consent at all times in medical practice, so as to protect the doctor/researcher and patients/subjects.
Sense1 of informed consent in medicine emphasizes that a patient must not simply yield to a professional when enrolling in research or commencing a medical program, but rather have the competence to understand disclosed information and freely agree to such a thing. While this does aim to ensure that autonomy is upheld and doctors are not able to implement paternalistic measures, problems are able to arise in practical situations. For example, when a doctor performs surgery on someone who may actually have autonomously authorized verbally said procedure, but when something accidentally goes wrong then sues the doctor for malpractice. In this instance, sense2 of informed consent is necessary to protect the doctor in the court of law.
Conversely, sense2 of informed consent in medicine is defined as authorization deemed to be effective for medical and research settings; it satisfies the rules of an institution and is heavily relied upon in legal situations. Sense2 aims to settle the problem presented when only sense1 is relied upon. However with simply sense2, patients may be unprotected from what they personally view as harm. The legal authorization of research or medical intervention by a patient effectively transfers responsibility and authority to the professional and if the criteria that constitutes the legal authorization (i.e. sense2) does not employ the need of a subject’s competence to understand disclosed information and freely agree to such a thing then other problems arise. Thus reinforcing the fact that sense1 is needed to protect patients.
The authors end the passage by affirming that sense2 should and often is developed with sense1 in mind, but bring up some problems about how to exercise both in practice. I argue that both should be applied at all times, even for minor procedures so that patients and doctors are protected both in terms of general wellness and legal situations.