The story of Henrietta Lacks has several settings but the most important of them is her hometown. Located in Clover, Virginia, Henrietta inhabits a small town characterized by farming and agriculture. In fact, the log cabin she lived in for quite some time was the slave quarters of a tobacco plantation where she spent her younger years helping her grandfather. Since this occurred prior to any of the civil rights movements of the later 20th century, her ethnicity and race were undermined greatly, one of the biggest health disparities she faced. Furthermore, she lived with her cousin who she eventually birthed several children to out of incestual marriage. These social determinants of health arguably set the tone for her life’s story and the unfortunate events that would come. More importantly, this story serves as evidence of how one’s background and environment can impact their health and well-being. Given her race, ethnicity, ancestral background, and low level of education, it is clear that social expectations of her are extremely low, if not nonexistent. Whereas the incestual relationship with her first cousin was not socially acceptable, I believe that Henrietta in part, needed it for survival.
The other half of the story takes place in Baltimore, Maryland where Henrietta and her husband move to after talking with another cousin. This evidence shows the importance of family in Henrietta’s life. In a world where negros are viewed as less than equal and still discriminated upon regularly, living in the right setting is critical to their lives. Baltimore was also the location of Johns Hopkins Hospital, which would inevitably play a crucial role in her life. It is worth noting that at this time in the mid 20th century, healthcare and medical research was in the developmental stage. The concept of informed consent was rarely practiced and standardized laws regarding patient records and privacy were not valued.
Henrietta Lacks is the main character of the story. She is a black woman who is diagnosed with cervical cancer. Although she eventually dies, the cells found in her tumor would be the backbone of medical vaccines and treatments in later years. Henrietta is married to David Lacks, her first cousin who impregnates her at the early age of 14. Together, they have 5 children, one of which suffers a developmental disability. Other main characters include her children. Deborah Lacks, the daughter of Henrietta, was highly responsible for the information Rebecca Skloot details in the novel. Joe Lacks, the youngest son of Henrietta, suffers great setbacks from his mother’s passing and in time winds up in jail which show the negative impacts on the lives of her family. Lucille Pleasant (Henrietta’s maiden name), is the daughter of Henrietta who is disabled.
According to the book and some external research, it is believed that her condition is the result of syphilis she contacted from her father while in utero. This could thus serve as another example of how her determinants of health were the result her environment. The final main character of the story is Dr. George Gey, the scientist who was able to successfully turn the HeLa cells into an immortal cell line. He takes the role of the antagonist who used her cells without permission and is believed to have made an exorbitant amount of profit from it. The story of Henrietta’s life as told by Rebecca Skloot details a sad story full of victimization and predation. Henrietta Lacks gets diagnosed with cervical cancer in the early 1950s. She undergoes various treatments including radiation and biopsies. When they remove samples of her cervix without her knowing, they discover that her cells are different from most human cells of the like. Instead of dying quickly, her cells have a much longer duration of life. When Dr. George Gey receives them, he manipulates and tests them extensively. Ultimately, he develops a line of cells that are immortal. Eventually, they would be used to create the Polio vaccine which would lead the medical world to erupt in curiosity and research. The cells were then cloned and used by researchers from all around to study, test, and develop new breakthroughs about many of the diseases which plague society. Henrietta’s cells were taken without her consent which raises several questions about ethics and procedures. On top of that, she did not receive compensation for the profit made over her cells. The story thus details the journey her and her family went on to carry after her death in 1951 to reclaim the rights to Henrietta’s cells.
The book showcases many themes, all with significant applications to the real world. First and foremost, ethics. HeLa cells were harvested without the consent of Henrietta or her family. This was an invasion of privacy which then turned a profit at their expense. Another theme involves the religion of the family who viewed her death as the result of harm from doctors. They see the HeLa cells not as immortal, but as the soul of her body reincarnated. The science-made immortality contradicts with their beliefs which also violates the ethics of the research. Lastly, the book shows the bias of institutionalized racism that came with the development of HeLa cells. White doctors who undermined the privacy and consent of Henrietta are proof of social injustices committed by providers.
One of the biggest problems Henrietta faces mirror her social determinants of health. As a black woman in the early 20th century, she was subjected to racism and was exploited by doctors with no regard for her privacy or ethics. Her poor economic status and low education put her at the mercy of the doctors as well as led her to make poor, life impacting decisions. With no access to healthcare, she was unable to get pre-natal care or learn that her husband may have had a sexually transmitted disease, thus causing her children to have medical issues.
Lack of literacy was also responsible for much of the problems the family faced after her death. The Lacks family was characterized by little education and even less health literacy. They are unable to understand much of what the doctors tell them, leaving them in the dark. The stark difference between the education and terms used by the doctors and lack of education of the Lacks leads to a gap in comprehension. Poor communication between the two leave them ignorant to what is being done with their mother’s cells. Furthermore, language barriers between the family and doctors impedes communication even more. This combined with little patience or empathy leaves the Lacks with nothing but hatred and mistrust.
Another major problem faced in this situation is the lack of cultural competence on the doctors’ behalves. They were unable to provide effective health care to the Lacks due to their absence of awareness. Doctors were not only affected by implicit biases when they removed the cells without her consent, but also failed to consider its impact on the family. Therefore, they overstepped religious boundaries as set by the family’s supernatural beliefs. Furthermore, their attitude regarding the Lack’s understanding of what was happening contributed to the mistrust of health care providers. Consequently, no knowledge of the Lacks or their cultural values were ever taken into consideration. The combined effects of Henrietta’s social determinants of health, low literacy, and the lack of cultural competence by the doctors contributed to the health disparities the Lacks family endured. As a result, we can learn from this story as future healthcare providers. It shows how as a provider, we must consider the background of the patient including their environment and social settings to understand them better. We must also be cognizant of how we communicate with them as it is important that they understand the situation fully. Lastly, we must be aware of the cultural difference between the provider and the patient and take those into consideration because of the impact they may have on them or their family.
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