Author Archives: J Raymond

The Public-Shaming Pandemic

COVID-19 has caused the globe to reckon with a myriad of issues that it wasn’t prepared to address. As T.D. Max highlights in his article “The Public-Shaming Pandemic” one of these key issues is that of privacy. In particular, the right an individual has to keep their medical information private when it could impact the health of other individuals. There have been several instances were officials released some patient information to the public with the hope that exposed people could begin isolating. However, the public has often taken this information and identified the individuals who brought the disease into the community to publicly shaming them on virtual platforms. This has greatly affected these individuals as they have experienced some of the harshest bullyings while already at their most vulnerable.

With officials focusing mainly on the tangible health consequences, they haven’t focused on the abstract, ethical impacts of the pandemic. However, I feel that this is nevertheless an important debate that should take place concurrently with the pandemic – not after. While I personally feel that public shaming can be an effective tool for admonishing hurtful behavior, I agree with T.D. Max that it can be detrimental when applied to a single individual. Moreover, the effect is amplified nowadays thanks to social media. There currently exists no measured way for an individual to be socially reprimanded without it ruining their life.

Consequently, I feel that we need to enforce stricter guidelines on protecting patients’ privacy. Not only is there something to be said about one’s right to medical privacy, but it will also serve as a temporary safeguard while our global society establishes more online privacy protections. By increasing the barriers to access medical information, the public cannot dox infectious individuals, thereby increasing general online privacy for the entire community. Simultaneously, we need to keep insisting on the public health measures that guard the community against COVID (ie, masks, social distancing, etc.). In most of these cases, infectious individuals transmitted the disease incidentally; with proper safeguards, the community has little to worry about and would have no rational explanation for bullying the individual. However, these are just a few thoughts on the matter, and I would welcome discussion on tangible solutions/benefits on restricting access to medical records during the pandemic.

Anatomy of an American Failure Reply

Ed Young highlights the myriad of ways the pandemic has been mishandled in his article, An Anatomy of American Failure. He highlights the intersection of problems that have exacerbated the pandemic, such as weak public health infrastructure, conspiracy theories, and a tenuously connected global supply chain. Moreover, the pandemic has disproportionately affected minority communities, such as African Americans, the elderly, and immunocompromised. All of these factors have created an almost apocalyptic landscape for many Americans. 

Additionally, Young also highlights the role the president had in determining the scale of the pandemic. As he says “Trump is a comorbidity of the COVID‑19 pandemic. He isn’t solely responsible for America’s fiasco, but he is central to it”. This is an undeniable fact about the pandemic. In a time of crisis, a leader is supposed to ensure safety to all people – not just his supporters. By any standard, Trump’s actions have been unethical. Though Young doesn’t touch on this, he robbed the American people of informed consent when he lied about the danger of COVID-19. In February, he publically downplayed COVID-19 as only being as dangerous as the flu while privately confessing to Bob Woodward that it was a seriously deadly disease. Some may say Trump didn’t have a moral obligation to disclose this information as he isn’t a medical professional, but as Commander in Chief, I feel he takes on the same level of responsibility for the entirety of the American people.

Though this is a turbulent time, I feel it is quintessential that we evaluate the morals of our elected leaders today. Putting aside political affiliations, Ed Young lays bare the myriad of ways Trump has acted unethically – just concerning the pandemic. With this in mind, it is important to consider how we ought to move forward as a county. In this class, we have been tools to evaluate actions plainly as being ethical or unethical. We have analyzed case studies and debated them in class, but these are real tools that we can use outside the classroom. Thus, as we wait to see what the future of our country holds, I urge everyone to truly evaluate his actions. Simultaneously, I wonder, beyond political action, how we can repair the damage this administration has caused and restore trust in our public health system? Currently, I am overwhelmed by watching the election results and have no idea how we can move past this politicization of the pandemic. If anyone could offer a sliver of comfort, it would be greatly appreciated. 

Henrietta Lacks, Part 3

In the final part of The Immortal Life of Henrietta Lacks, Rebecca Skloot details the Lacks’ revelation that their mother’s cells had been harvested without consent. This comes several decades after the initial procedure and as a complete surprise and shock to the family. The Lacks, who largely remained uneducated, were confused as to how the cells lived years after their mother’s death. In pursuit of answers, we follow Deborah on her journey to piece together her mother’s history with help from the author herself. Together, they learn about the paternalistic medical culture of the 50s that Henrietta entered, the explicit racism that compounded many of her problems, the multibillion-dollar industry that arose from HeLa cells, and, more personally to the family, the fate of the eldest sister, Elsie.

Throughout this section, it is clear that the family lives in the irony of their mother’s “contribution” to healthcare and their socioeconomic status. This is perhaps best epitomized when Deborah says on page 256 that “I would like some health insurance so I don’t have to pay all that money every month for drugs my mother cells probably helped make.” This family has experienced one of the most well-documented instances of medical exploitation, and yet the lack of compensation for this injustice has trapped them in a cycle of poverty wherein they cannot afford healthcare. In essence, Deborah, Henrietta, and the entire Lacks’ family are victimized by the same system decades apart.  

However, it is noteworthy that the only professionals to ever acknowledge the injustice of this victimization are the international researchers, such as Christoph Lengauer. The Australian researcher opened his lab to the family and was the first professional to take the time to explain HeLa to the Lacks. Despite being a white scientist at Johns Hopkins, the very group that had started the Lacks’ plight, he was able to say “Hopkins pretty much screwed up”, with no qualms. To me, this indicates the problem lays within the culture of American medical practice and research. There is something fundamentally paternalistic in how we train our scientists and it encourages the separation of a patient from their treatment. Whether this stems from elitism, racism, sexism, or other bias is up for debate, but these were all undeniably evident throughout the novel and definitely contributed to the tough situations faced by the Lacks. As these seem to be fundamental qualities of our culture, I feel we are destined to live in a cycle of paternalism where the most vulnerable populations receive the worst health outcomes. For me, the only solution would be to adopt a more socialized version of healthcare. This would allow a family like the Lacks to break the cycle of poor health without weighing their financial limitations. However, given the current American political climate, I doubt this would ever happen. Thus, I wonder if anyone has a proposal that could circumvent such a measure while achieving the same goals? 

The Immortal Life of Henrietta Lacks, Part 1

In Part One of The Immortal Life of Henrietta Lacks, Rebbeca Skloot primarily documents the life of Henrietta. She was born in Roanoke, Virginia in 1920 and grew up working on her family farm. Here, she met her cousin, Day Lacks, whom she would marry in 1941 and parent five children with. By 1942, they had moved to Baltimore so that Day could work in a steel mill and hopefully achieve the American dream. However, the final chapter of Henrietta’s life began when she developed cervical cancer. In January of 1951, she first went to the doctor complaining of a “knot in her womb”; by early October, she passed away in John Hopkins’ colored ward. Yet, as highlighted by Skloot, this would not necessarily be the end of Henrietta herself. During her care at John Hopkins, her cervical cells were unknowingly harvested and found to be “immortal”. Her cells could survive in a culture and be subjected to otherwise inhumane experiments. After her death, her cells, named HeLa cells, were used to study the humane genome, understand the effects of deadly toxins, and to create the polio vaccine. 

While it is undeniable that the HeLa cells were responsible for some of the most critical advancements in medicine, it is also clear that their discovery came through morally dubious actions. As stated on page 63, at the time, the medicine did not prioritize patient autonomy but rather “benevolent deception.” Doctors would withhold medical information so “as to not confuse or upset patients.” Doctors knew best, and that was that. Clearly, this culture of unwarranted paternalism infringed on the desires of patients, including Henrietta. As stated on page 48, it was not made clear to Henrietta that the radium treatment would make her infertile; had she known, she would not have undergone the procedure that led to the discovery of the HeLa cells. While a paternalistic medical culture was common back then, that doesn’t justify the violation of Henrietta’s rights. A patient should always have a certain degree of autonomy and basic knowledge of the treatment they are undergoing; for Henrietta to unknowingly consent to infertility is clear evidence of a violation of that right. To somehow justify the treatment of Henrietta at John Hopkins by saying “at least we made advancements due to HeLa” is irrelevant to the question of whether the cells were morally obtained. What happened to Henrietta was patently wrong, though we have all benefitted from that original sin. Yet, if modern physicians were responsible for Henrietta’s care, I feel many of them would still take a paternalistic approach, especially if they knew the ultimate outcome from HeLa cells. Even with this foresight, I feel there is no way to justify Henrietta’s treatment at John Hopkins and harvesting the HeLa cells. 

Reflection on The Concept of Informed Consent by Faden and Beauchamp

In “The Concept of Informed Consent”, by Ruth Faden and Tom Beauchamp, they discuss the two primary philosophies of informed consent, which they label Sense1 and Sense2. Sense1’s primary focus is on patient autonomy and the requirements for true authorization. Under this definition, informed consent is given if “A patient with (1) substantial understanding and (2) substantial absence of control by others (3) intentionally (4) authorizes a profession to do intervention”. Overall, Sense1 concentrates on autonomous authorization and patients’ rights. 

Conversely, Sense2 focuses on the legal aspects of informed consent. Sense2 is a policy-oriented lens that doesn’t take into consideration the patient’s right to autonomy. While Sense1 had specific steps to determine if autonomous authorization has given informed consent, under Sense2, any consent is informed consent. Autonomous authorization does not exist, merely authorization that has been well documented through procedures that satisfy the rules in institutional practice. 

While Sense1 and Sense2 may seem mutually exclusive, they can be implemented simultaneously. For example, a patient may give autonomous authorization while also documenting said authorization in the form of a consent agreement, thereby reflecting both definitions of informed consent. However, just because both definitions of informed consent can be reached, it doesn’t mean they always are in practice. Faden and Beauchamp present and example wherein a minor gives the autonomous authorization to donate one of her kidneys to her dying twin sister. While the sister’s life is saved, because she is a minor, her parents decide to sue the healthcare team because they violated her Sense2 informed consent. This highlights that Sense1 and Sense2 are not only individually important but ought to be obtained when the situation grants it. 

Ultimately, Faden and Beauchamp conclude that only Sense1 truly captures the traditional meaning of “Informed consent”, which I agree with. I would argue that, for most people, informed consent is given when a doctor explains the procedure to you and you decided to proceed. This is encapsulated in the Sense1 definition of informed consent and isn’t covered in the Sense2 definition. To me, Sense2 is more of a legal definition, and while important, doesn’t necessarily apply when strictly discussing bioethics and patients’ right to autonomy. Consequently, if I had to rank the value or importance of these definitions, I would say Sense1 should be prioritized over Sense2. ( Though, as illustrated by the kidney example, both ought to be obtained).