Category Archives: The Immortal Life of Henrietta Lacks I

Henrietta Lacks Part 1- The Absence of Informed Consent

Skloot’s The Immortal Life of Henrietta Lacks tells the story of a 31-year-old African American woman who was treated for an aggressive form of cervical cancer in 1951 which she died of a year later. While performing her first radiation treatment, the doctors also took a sample of her cancerous cells which became the first human “immortal cells” known as “HeLa” which were a key part of the advancement of many medical treatments including chemotherapy and the polio vaccine. Skloot begins the book by talking about Henrietta’s childhood and life as a young adult, where she lived in impoverished circumstances and was obviously not able to receive convenient and consistent medical treatment. At the time, Johns Hopkins was one of the only hospitals in the Baltimore area that had a “colored” wing where they would treat black patients.

The morality of the doctor’s treatment of Lacks is heavily scrutinized, as no informed consent was given by Lacks. From a legal standpoint, the doctors received all the consent they needed to perform the cell biopsy, as she did sign a form stating her consent for the doctors to “perform any operative procedures…that they may deem necessary” (Skloot 77). However, she was never informed what exact procedures were going to be performed and why, which goes against all criteria of informed consent. Additionally, she was never told the procedures would make her infertile. Not only is this permanent and important information regarding her procedure, but she also stated she would not have gone through with the procedure if she had known this was a consequence. This is one of the main reasons why informed consent is so important. She lost the ability to do something she loved -having children- which would have been preventable had she received all the information. One might argue that this is besides the point considering she may have died even quicker without the radiation. However, a patient, regardless of the outcome, should have the right to make a decision about their body regardless of the consequences either way.

One quote that really stood out to me was Grey calling himself “the world’s most famous vulture, feeding on human specimens almost constantly” (Skloot 76). I don’t believe that Grey saw anything wrong with getting his samples without consent, especially when he viewed it as a sort of “payment” for treating the patients in the public wards such as the colored ward at Johns Hopkins. This highlights the racial issues within healthcare at the time. Grey may have been willing to treat people of color, but he saw no issue with taking from them personal property such as cells without their consent.

Henrietta Lacks Part 1

The Immortal Life of Henrietta Lacks is a book that went against the topics discussed thus far by demonstrating the racial injustices within healthcare, the lack of patient autonomy, and the lack of informed consent provided to patients. Towards the beginning of the book, the author provides information about the lack of medical care for African-Americans. Still, Johns Hopkins Hospital was one of the few that provided public medical care for them, but it came at a price. Dr. Richard TeLinde would often use patients within these public wards for his research without their knowledge. This goes against the patient’s right to consent and autonomy and is both morally and ethically wrong. It may be beneficial from a utilitarianism standpoint, but looking at its face value, the act in question is wrong.

When Henrietta Lacks went to Johns Hopkins for treatment for her mass, she was handed a form in which, if signed, gives consent to any treatment and anesthesia that the physician deems necessary. This is a problem as it does not provide enough information about the procedures that may be given, and given that Henrietta is not able to read well, informed consent is not given. From a legal perspective, the form that was provided is sufficient, but what lacks is the ability for the patient to understand and give their full autonomy toward the decision of their care. Later in the book, during the surgery to treat the cancerous mass, Dr. Lawrence Wharton Jr. shaved two pieces from Henrietta’s cervix, one of the healthy cervix and one of the cancerous mass. These shaved pieces were later used for cell growth research without Henrietta’s approval.

Lastly, Henrietta, during her continued treatment for her cancer, was then informed that she was infertile due to the first treatment provided. This destroyed her as she loves having kids, and with the lack of critical information that the physicians were required to provide, she was unable to make an informed decision on whether she would go through with the procedure. It was stated that warning patients about fertility loss before a cancer treatment were even standard procedure for Johns Hopkins. Why was she not provided with the same standards as other patients that are treated within Johns Hopkins Hospital? Was it due to the pigment of her skin, or possibly due to the desire of the samples taken that were used for research? Was this for the greater good as it has provided a giant leap for science and medicine?

Thoughts on Part 1 of the Immortal Life of Henrietta Lacks

In comparison to past readings, The Immortal Life of Henrietta Lacks is especially compelling. The intersection of history, social justice, biology, and ethics makes this truth an indelible, consequential narrative that all within (and outside of) the medical field should hear. It evokes philosophical and moral dilemmas that highlight how Henrietta Lacks became a tragic victim of medical professionals. The poignant reminders of the cruel treatment of black people in America less than 80 years ago make this tale even more frustrating and important to read.

I was first struck by the overwhelming suffering of Henrietta and the grace and simplicity by which she lived her life. The daily life for lower class African-Americans in the 1920s was challenging. Her upbringing, living conditions, and responsibilities are drastically different from the seemingly luxurious ones in my life. She was a kind, vivacious, generous Virginian who handled her obstacles with the utmost humility and morality. Her conscious effort to hide her pain and serious complications during and after childbirth, coupled with America’s broken social dynamic, ultimately led to her downfall.

Healthcare for whites vs. blacks in the mid-twentieth century were two different things. Henrietta was deprived of informed consent and autonomy in almost all of her medical procedures and appointments, yet the Johns Hopkins Hospital was painted in a charitable light, making their services to Henrietta seem heroic. Although she technically possessed a certain degree of autonomy, it was as if any service the hospital provided was supposed to be met with obedience and agreement as reciprocity, thereby diminishing her intrinsic autonomy. Henrietta’s treatments for cervical cancer were physically damaging and in the end, ineffective. Arguably the most infamous action was the retrieval of her cells which was done entirely without consent. Henrietta Lacks was fully deprived of quality care.

While I have focused much on expository information, I am nervously awaiting the coming events and progression of her story, and what’s to come from the HeLa cells. So far, it is evident that her family was not given compensation or reparations for the toll that this tribulation had on them. At the very least, her story must be told to spread awareness and pose important questions for the modern medical field. And although Henrietta’s case seems wildly outdated, similar problems still exist today.

Part 1 Locks

Part 1 of the book touches on many of the major bioethical themes that we’ve discussed so far, including patient autonomy, informed consent, and equity in access. One initially striking thing is the way that Johns Hopkins seemed to offer unusual equity in access to health care for poor and African American patients. “Hopkins was the only major hospital for miles that treated black patients”; even though it was one of the top hospitals in the country, “its public wards…were filled with patients, most of them black and unable to pay their medical bills” (15). Skloot points to Hopkins’ historical origins as a charity hospital for the sick and poor; it certainly seems to have offered medical care that — according to the expectations of the time and the values of the medical profession — offered something like a real commitment to distributive justice. 

However, as we move through the reading, we see another reason why broad access to care might have been provided at Hopkins. In exchange for treatment, patients were essentially expected to forfeit their patient autonomy and right to informed consent. It seemed to be an operating assumption at the hospital “that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (30).

Herietta’s case exemplifies this. First of all, the “operating permit” that she signed before her treatment would not qualify as informed consent under Canterbury vs. Spence or any other test. This was a generic waiver for all procedures that the doctors might decide on at any point in the future; she would have no knowledge of and no role in deciding specific interventions (31). In addition, she was apparently not informed that the result of her treatment would be infertility (46). Even though information about hysterectomies was supposed to be provided at the time, it seems that black patients were often just not told. Their agreement was not considered necessary, an especially extreme form of paternalism (“benevolent deception”). Henrietta also had no knowledge that her cervical tissue would be cultivated and used in experiments by doctor Gey. Autonomy over her own tissue and how it  might be used was not recognized. 

Also, Henrietta was denied ownership over and financial stake in her physical and genetic material, which has since been used in countless experiments and to make countless people wealthy. In the book, Henrietta’s family seems angry both that she never received recognition and that there was no effort to remunerate her family for the financial gains from her tissue. As Henrietta’s story becomes more widespread, it’s interesting to think how it might affect decisions about how people are paid for their contributions to medical experiments and the results of those experiments. Could we one day patent our own DNA or tissue and hold a certain ownership over it for the purposes of research and resultant products and procedures?

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. 

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.