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The story of Henrietta Lacks and her immortal cells has had profound impact on the world as we know it; an impact she could not have imagined and would not live to experience. Not only have the cells harvested from her cervical biopsy allowed for groundbreaking developments in medicine and research, but her story has now impacted countless individuals. I was introduced to The Immortal Life of Henrietta Lacks (Skloot, 2010) a few years ago, prior to entering the healthcare field.
At that time, the book was certainly moving and informative. Having completed a year of nursing school, I now see the book through an entirely new lens.
Reading the story this time, the event that had the most impact on me and shaped the way I saw the rest of the story was the moment Henrietta Lacks received her diagnosis of cervical cancer. As Skloot (2010) describes it, she “simply went on with her day as if nothing had happened, which was just like her – no sense upsetting anyone over something she could deal with herself” (p.
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31). I have been spending a great deal of time considering social determinants of health, culturally competent care, and how one’s individual culture and history impacts how they interact with the healthcare system. This one sentence speaks volumes to me about the individual culture of Mrs. Lacks.
My family has its roots in rural poverty, and I recognize the responsibility of stoicism that often accompanies it. For example, my grandfather was once thrown from a horse on his farm and subsequently left his boots on for two weeks until the swelling went down, never seeking care from a doctor.
Years later an x-ray revealed he had broken both of his ankles. This attitude is one I have seen demonstrated time and time again by individuals accustomed living with little resource and much responsibility. Often times, individuals living in poverty in rural areas are conditioned to living with a certain level of discomfort. Though this one sentence gives little insight into the inner emotional and mental state Henrietta Lacks carried out of her diagnostic conversation, what she understood of her diagnosis, or what was explicitly communicated to her, it can be deduced that she approached this event like any of the other hardships she had encountered. She persevered quietly, stoically, and selflessly. That calm selflessness, especially in light of the impact of her cells, was especially moving to me.
When one considers the size of a cell, the span of a single individual’s life, even the scope of impact of a single researcher or study, squaring the impact of Henrietta Lack’s cells is truly nothing short of staggering. In the almost 70 years since her biopsy, our concept of possibility in medical and scientific research has been catapulted. Thanks to her cells, cloning moved from the realm of science fiction to reality. Her endlessly-replicating biopsy has spawned countless advances in cancer research and clinical treatment. Their use in Jonas Salk’s research helped to eradicate polio. (Skloot, 2010). Women (myself included) are able to receive a vaccination against Human Papilloma Virus (HPV) as a result of her cells, and developing treatment and furthering research in HIV and AIDS was made possible. In fact, much of the field of virology as immunologists know it today can be credited to researchers working with HeLa cells. Her DNA has traveled to outer space, the bottom of the ocean, and to nearly every corner of the earth. Research related to telomeres in HeLa cultures has taught us how our cells age, and we now have a definitive map of the human genome which has empowered the discovery and identification of a breadth of genetic disorders. (Greely & Cho, 2013).
As a black woman living in a time of great racial and gender-based disparity, Henrietta Lacks was arguably in the lowest social caste in the United States. Even so, her DNA has revolutionized women’s health care. Regular screenings for cervical cancer are now rather widely available in the developed world, and lives saved as a result. In a twist of fate, the aggressive disease that so quickly killed her has allowed for the lives of innumerable women to be protected against the very same disease through extensive research in cervical cancer and its relationship to HPV.
Of course, this story is not only one of the heroisms of progressive research and the proverbial miracle of the immortal HeLa cells. Following the unconsented biopsy and the multi-billion-dollar industry that blossomed from its culture, it has become a larger conversation. It is one of informed consent, abuse of power, a disregard for self-determination, a condemning reflection of our country’s racial history, and a glaring exposure of how far we have yet to go, even 68 years later. This tale and the abuse of power it involves is also far from an isolated one. Research ethics and methodological policy was spawned from cases such as this in which human rights were violated. At the heart of each of the following two cases is the dehumanization of subjects by those in power for the sake of progress.
Willowbrook State School was an institution that interned mostly severely handicapped or mentally disabled children which saw alarming rates of hepatitis transmission among its population. In an effort to research hepatitis and develop a vaccination, from 1956-1970, researchers knowingly exposed disabled children to the virus, studying the effects of potential treatments on the disease course (Fanswiwala, 2016). Similarly, a study beginning in 1932 in Tuskegee, Alabama monitored the disease course of syphilis in African American men. Involving 600 men, 399 who tested positive for the disease, the study intentionally deceived participants and withheld known treatment, continuing for a total of 40 years.
These researchers were paradoxically, advocating for public health at the expense of the health of their subjects. Though Henrietta Lacks wasn’t the subject of experimentation by exposure to disease, and treatment wasn’t withheld from her in the name of science, her self-determination was similarly prohibited through an abuse of power. This Machiavellian attitude towards progress in healthcare research has been challenged in recent decades, thanks to the public outcry that came in the wake of these human rights violations.
Of all of the magnificent advances that followed the Mrs. Lacks’ nonconsensual biopsy, arguably one of the most important has been a discussion about patient’s rights as it relates to consent. Likewise, the other studies described above undeniably furthered our understanding of treating disease. However, it is the intangible, the discussion about self-determination and ownership of one’s own biochemical makeup that continues to further civility in medical research. As a direct result of the Tuskegee syphilis study, we now have the Belmont Report, published in 1978 and laying concrete ethical guidelines for human subjects in research. The report focuses on the ethical principles of respect, justice, and beneficence, all foundational to modern medical practice (Sims, 2010). In the years subsequent to the hepatitis study at the Willowbrook State School, policy was enacted which protected the civil rights of developmentally and intellectually disabled children and institutionalized persons (Reimann, 2014).
As a result of HeLa and similar moral tales of medical research, we have historical and ongoing discussion surrounding informed consent, patient autonomy, and the responsibility of medical professionals to instill confidence and trust in the public. Out of the horrific violations that occurred in the name of science came decades of development in public policy, of which the Healthcare Portability and Accountability Act (HIPAA) is an example. A case like Henrietta Lacks and her cells would no longer be legally tolerated in the United States.
All of these events, and the subsequent policy advances made, point back to one overarching principle. Health is reliant upon so much more than one’s individual capabilities, lifestyle decisions, or the quality of care they may or may not receive in a clinic (U.S. Department of Health and Human Services [USDHHS], 2013). There is a myriad of factors that can affect health outcomes that are beyond an individual’s control. Varying levels of access to the resources that promote health: safe housing, a clean environment, quality education, adequate transportation, and social stability, create disparities across generations of people. As eloquently put by the World Health Organization (WHO), “This unequal distribution of health-damaging experiences is not in any sense a ‘natural’ phenomenon but is the result of a toxic combination of poor social policies and programmes, unfair economic arrangements, and bad politics” (WHO, 2008).
It doesn’t require a stretch to see how these SDOH, namely racism and access to healthcare, are guiding forces in the ongoing tale of Henrietta Lacks and her family. Henrietta Lacks never knew a world without Jim Crow laws. Even in present day, one white Lacks relative “cannot see the sense” in integration (Skloot, 2008, p. 125). Water fountains and hospitals alike were segregated, though reportedly hospitals and the care received within were more separate than equal (Skloot, 2010). The closest hospitals to Mrs. Lacks’ hometown didn’t treat black patients. Johns Hopkins, where she eventually would receive treatment, was founded with a mission of giving all patients quality care, “without regard to sex, age, or color” (Skloot, 2010, p. 166). Even so, Johns Hopkins was segregated. As a black woman in that time, Mrs. Lacks was arguably in the lowest social caste in the United States. Raised in old slave quarters in rural Virginia, the color of skin determined much of her circumstances and opportunities. It also very likely impacted the physician’s willingness to harvest her cells for without consent, and the quality of education she was given about her surgery and radiation treatments. As was seen in the Tuskegee syphilis study, African American bodies were often dehumanized by the powers that be.
Racism and access to healthcare are inextricably linked in the case of this family. The factors that impacted Henrietta’s access have only marginally improved for her family in present day. For example, the quality of education and health literacy they had access to was limited by systemic racial inopportunity. Though her cells had become an industry worth billions of dollars, her husband and children could not afford quality healthcare or health insurance at the time Rebecca Skloot wrote her book about the family (2010). Not only that, but in the years after learning about the existence of HeLa cells, their trust in healthcare was too broken to seek out even the most needed of treatment. For example, David Lacks (Henrietta’s widower) denied amputation for his gangrenous toes resulting from poorly controlled diabetes, resulting in a leg amputation later on. Further back in the Lacks’ family history there were tales of doctors who would perform medical experiments on slaves in the middle of the night, resulting in a generation general distrust of medical professionals.
Since 2003, CNLs have been working to close these inequities in social resources that lead to poor health outcomes. As leaders in the field, CNLs act as advocates for evidence-based practice, and participates its development, safe implementation, and evaluation as it relates to patient care in all health care settings (American Association of Colleges of Nursing [AACN], 2019). The CNL strengthens the interdisciplinary team as it cares for the health of individuals and society at large.
There are many ways in which a CNL could have benefitted Henrietta Lacks. Namely, I consider ways in which her social determinants of health could be mitigated. First, I point to the ninth essential of master’s level nursing practice (AACN, 2013). A clinical nurse leader would have the tools to consider which social determinants of health a patient like Mrs. Lacks would be experiencing, and tailor their holistic assessment accordingly. Furthermore, the nurse would provide culturally-competent and patient-centered care. After beginning radium treatment, Mrs. Lacks denied being educated on the fertility effects of the treatment. A master’s level practicing nurse could have prevented that by thoroughly educating the patient, assessing for comprehension, and thoughtfully answering questions. It wasn’t until well into her treatment course that Mrs. Lacks chose to share her experience with anyone. This social isolation can lead to poor psychological and social health outcomes. As such, a master’s level practicing nurse could facilitate those conversations and allow the patient to work through any concerns or misconceptions. Perhaps she could have conversed with a support person in her family had she been coached through the conversation and encouraged to surround herself with family.
The second essential that could have been utilized in her care is the eighth CNL essential: “clinical prevention and population health for improving health” (AACN, 2013). Prior to moving to Baltimore, Henrietta Lacks and her family had lived in much the same geographic, socioeconomic location for generations. Had quality healthcare been made available to the population there much earlier, the entire trajectory of the story may have changed. Perhaps there were risk factors that could have prevented her cervical cancer, or an earlier diagnosis that would have been made possible by clinical nurse leader advocacy. With a more positive history with medical professionals, the lives and health outcomes of her family could have been improved, and their trust maintained rather than squandered. Certain diet and lifestyle-related illnesses and/or deaths may have been ameliorated by advocacy for culturally appropriate, equitable care. If a clinical nurse leader had utilized public health advocacy and developed partnerships locally around the Lacks family long before Henrietta was symptomatic, the health outcomes of her and her family may have been quite different.
Hela and Other Ethical Downfalls in Research History. (2021, Dec 21). Retrieved from https://studymoose.com/hela-and-other-ethical-downfalls-in-research-history-essay
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